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  • 1

    AutismHow Autism Differs from an Intellectual Disability and Mental IllnessPart I – December 3, 2018

    P R E S E N T E R :

    M O N I C A M E Y E RM M E Y E R CO N S U LT I N G , I N C .

    H T T P : / / . M O N I C A M E Y E R .CO M

    12/2/18MONICA MEYER CONSULTING, INC.

    [email protected]

    The First Use of the Word AutismThe word autism comes from the Greek word autos meaning self.In 1911 a psychiatrist by the name of Eugen Bleuler coined the term “autism” and “autistic” to describe an aspect of schizophrenia in which a person withdraws from the outside world into himself.

    (Sicile-Kira, 2004)

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    “Classic Autism” - Leo KannerIn 1943 Leo Kanner, psychiatrist, used the term autistic in his publication describing eleven children with characteristics similar to how we define autism todayTo view Kanner’s publication in it’s entirety:http://www.neurodiversity.com/library_kanner_1943.pdf

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    History and CausesUnderstanding an

    “If you’ve seen one person with autism…You’ve seen one person

    with autism.”Temple Grandin

    Never assume that “one-size-fits-all”

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    http://WWW.MONICAMEYERCONSULTING.COMhttp://www.neurodiversity.com/library_kanner_1943.pdf

  • 2

    Poll #1: Is Autism a ____________________

    1. Neurological Disorder

    2. Mental Illness

    3. Intellectual Disability

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    What is Autism?Autism is a developmental disability that is life long and typically appears in the first three years of life.Autism is a neurological disorder that affects functioning of the brain (not an emotional-psychological disorder/mental illness)

    Autism is five times more common in boys than in girls.Autism knows no boundaries and has been found throughout the world, in families of all racial, ethnic and social backgrounds.

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    No Physical Attribute or Blood Test that Differentiates AutismThere is nothing about how people with ASD look that sets them apart from other peoplePeople with ASD may communicate, interact, behave, and learn in ways that are different from most other people.

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    Autism Spectrum DisorderThere are degrees of autism. It exists on a continuum from mild to severe…

    Can and often does co-exist with other disabilities like;§ Intellectual Disability, Deaf, Blind, Down Syndrome, Bi-

    Polar Disorder, Cerebral Palsy

    Primary diagnosis (pervasive) over and above any other diagnosis.

    Significant differences from intellectual disability and mental illness…but CAN and often is a co-occurring disability

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  • 3

    Autism: Different from other Developmental Disabilities

    Was defined as a Triad of ImpairmentThe DSM-V changes how we look at autism using only two categories;

    1. Persistent social communication and social interaction, and….

    2. Restricted and repetitive patterns of behavior.

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    Autism: Different from other Developmental Disabilities

    Autism is a Neurological Disorder that can and often does co-exists with other disabilities

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    Alarming Statistics The CDC has announced that autism is the fastest growing serious developmental disability in the United States.

    On March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD).

    Currently, it is estimated that 1.77 million Americans are affected by autism.

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    2000-2010 Increase in Prevalence of ASD

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    What is Autism?Autism is five times more common in boys than in girls.Autism knows no boundaries and has been found throughout the world, in families of all racial, ethnic and social backgrounds.

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    Autism Increase Compared to other Developmental Disabilities

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    www.sciencedirect.com

    Poll #2:What Causes Autism?

    1. Bad Parenting

    2. Immunizations

    3. There are many theories including heredity, genetics, medical problems, viruses

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    Causes of AutismResearchers are investigating a number of theories, including the link between:§ Heredity§ Genetics§ Medical problems§ Viruses

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    Heredity and GeneticsPattern of autism or related disabilities in families supporting a genetic basis to autism

    No one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited

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    Heredity and GeneticsIt also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.

    Genes + Trigger

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    Heredity and Genetics Other Researcher•Possible conditions, a cluster of unstable genes may interfere with brain development

    •Possible gene mutation

    •Investigating problems during pregnancy or delivery

    •Environmental factors:§ viral infections

    § metabolic imbalances

    § exposure to environmental chemicals

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    Whatever the cause…It is clear that children with autism and PDD are born with the disorder or born with the potential to develop it. It is not caused by bad parenting. Autism is not a mental illness. Children/people with autism are not unruly people who choose not to behave. No known psychological factors in the development of the child have been shown to cause autism (I.e. Refrigerator Mother).

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  • 6

    Alarming Statistics The CDC has announced that autism is the fastest growing serious developmental disability in the United States. Currently, it is estimated that 1.77 million Americans are affected by autism.

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    Despite some similarities between autism and intellectual disabilities, there are a number of important differences.

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    How Autism Differs from an Intellectual Disability

    How Autism Differs from an Intellectual DisabilityAutism cases vary in IQ range, with both below and above average test results. In fact, it is quite common for people with severe autism to have an IQ of 70 or below, while some people may have high IQs, while a small population are considered genius level. This differs from people with intellectual disability who generally have IQs of 70.

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    How Autism Differs from an Intellectual DisabilityA person with intellectual disability develops and performs slower than his peers but he gains skills at an even pace. A person with autism's progress may not be so clear cut as a person with a intellectual disability. The person with autism may make progress in some areas easily but has difficulties with skills, such as language, communication and social interaction.Intellectual disability may present speech and vocabulary challenges but not to the same degree as a case of severe autism, which can render someone nonverbal.

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  • 7

    How Autism Differs from an Intellectual DisabilityRoughly 25 percent of people with autism speak few or no words. A generation ago, that figure was closer to 50 percent. Most researchers agree that the decline is due to the recognition of more people with milder forms of autism, as well as to the advent of early intervention programs that have helped more children develop language than in the past……yeah!

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    How Autism Differs from an Intellectual Disability“One of the primary success stories of early interventions is that they promote language development,” says Helen Tager-Flusberg, director of the Research on Autism & Developmental Disorders program at Boston University. “Nevertheless,” she says, “there are clearly individuals who are diagnosed early, do have access to high-quality interventions, and still fail to acquire spoken language.”

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    How Autism Differs from an Intellectual DisabilityIQ is clearly a thorny issue!

    Many minimally verbal and non-verbal people with autism are diagnosed with a co-morbid diagnosis of intellectual disability, but some people who could not speak, could read with fluency and comprehension.“It can be difficult to tell how intellectually impaired somebody is,” says Nancy Brady, assistant professor of speech, language, hearing sciences and disorders at the University of Kansas. “If they can’t speak, then we maybe undershoot them when we assess them and assume that they are much more impaired than they actually are.”

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    How Autism Differs from a Mental IllnessAutism Spectrum Disorder is a disorder, so it is not an illness. More specifically it is a neurological disorder.There is a difference between a disorder and an illness. An illness is an harmful physical or psychological deviation in an organism, more particularly in the homeostasis.

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    http://sfari.org/news-and-opinion/in-brief/2012/clinical-research-early-interventions-improve-languagehttp://sfari.org/news-and-opinion/investigator-profiles/2011/helen-tager-flusberg-decoding-the-language-of-autismhttp://www2.ku.edu/~lsi/research/profiles/brady_nancy.shtml

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    How Autism Differs from a Mental IllnessHomeostasis is the ability to keep the internal environment into balance. While a disorder is merely a deviation in the state of health of body and mind. Thus an illness can be a disorder, but not every disorder is an illness.

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    How Autism Differs from a Mental IllnessFor example a person with bipolar disorder experience a psychological disorder that is a mental illness.

    People with bipolar disorder have times when they are depressed or manic, hence out of balance, sometimes accompanied by a psychosis.

    Both psychological and physical homeostasis thus may be affected by this illness. The psychosis, depression or mania is what makes it significant, because for instance during a psychotic episode a person loses touch with reality.

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    How Autism Differs from a Mental IllnessA person with autism experiences a “neurological disorder.”Social functioning is impeded, that in itself may be distressing to a person with autism, but a person with autism is “aware” of it, hence it is not significant. It is also not psychological but neurological. And because homeostasis is not physically or psychologically affected by the disorder, it is also not an illness.

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    Now you know that Autism is significantly different from an Intellectual Disability, what do you need to know next!!

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  • 9

    Poll #3Why is it important/necessary to understand the characteristics of Autism for the person you serve?

    1. It isn’t really necessary, I have been a support provider for years, I’ve got this!

    2. Just because I have worked with one person with autism, doesn’t mean I know how to support every person. I need to understand how they experience their autism so I can implement the appropriate strategies to meet their neurological needs.

    3. One size fits all, the person with autism will need to adapt to my support strategies!

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    Characteristics of Autism

    Identified

    Defined

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    The Characteristics of Autism?Cognitive differencesDifferent learning styleSensory processing difficultiesDifficulty with social relationshipsNeed for samenessCommunication Difficulties

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    Cognitive DifferencesMost people with autism focus on details and are unable to see the whole, or how things fit together. They have difficulty integrating information, extracting meaning and distinguishing among relevant details

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  • 10

    Different Learning StyleFor most people with autism, their eyes work better than their ears, they are typically strong visual learners and have more difficulty processing languagePeople with autism have difficulty organizing thoughts, tasks and process.

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    Sensory Processing DifficultiesDifficulty modulating stimulation

    ◦ Touch (could be sensitive to soft touch and would prefer a more course or firm touch)

    ◦ Auditory input (loud sounds may actually be painful to their ears, screaming could indicate the need to block out the other noise in the environment)

    ◦ Oral stimulation (I.e., food textures, hot and cold sensitivities)◦ Olfactory (Smell sensitivity).◦ Proprioceptive Input, need for movement and joint compression◦ Vestibular Input, need for swinging, spinning, etc., to develop a more

    mature vestibular system

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    Difficulty with Social RelationshipsMost people with autism struggle with the complexities and nuances of social interaction.◦ Making friends, sometimes they do not know how, it the skills needs to be

    taught.◦ Difficulty initiating conversations and volunteering information. This too is

    a skill that can be taught.◦ Understanding someone else’s perspective, “Theory of Mind”, “Mind

    Blindness”

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    Difficulty Socializing and Sustaining Relationships.Often times young children with autism relate better to adults, because adult typically are more predictable.It is not that people with autism do not relate, they may relate in a different way.It is not that people with autism do not want to make friends, but often times they do not know how.Knowing and developing a relationship with the person with autism is imperative

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  • 11

    Human Interest/Social DevelopmentLack of social reciprocity, empathy, awareness of the perspective of othersDifficulty developing peer relationshipsDoes not seek to share enjoyment, interest, or achievements.

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    Communication DeficitsLack of conversation reciprocityDifficulty understanding non-verbal cuesDifficulty sharing a momentLanguage may sound like gibberish Understanding conceptsSome days language is easy to understand and not on others

    Literal, concrete interpretationDifficulty with volume control, cadence and intonationRepetitive use of known phrasesLarge vocabulary, but not knowing what they are sayingDifficulty answering questions

    Understanding Idioms and sarcasmEcholalia

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    Need for SamenessUnusually resistant to changeDevelop routines quicklyMay need to repeat before moving onMay have one area of special interest that is highly developed

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    Behavior is Communication!You cannot extinguish a behavior without understanding what the behavior is communicatingDoes the person have a functional, efficient way to communicate his/her wants or needs?Behavior is a method to avoid or obtain

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  • 12

    The Key to Understanding Behavior

    Understand the Communication Need

    Think NEED!Why does a person NEED to

    engage in challenging behaviorto get “their needs met”?

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    Keys to understanding communication needs…When someone displays challenging behavior…step back and think:

    What are they trying to say?Our job is to help them express themselves in a way that they learn how to get their needs met without needing to act out.

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    Keys to Understanding Communication Needs1. Avoid power struggles!

    2. Relationships

    3. Functional Communication Supports• Not yours, but the individual with autism• How do you assess the efficacy of the supports?

    4. Stop and ask “What need is going unmet?”

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    Teachable Moments

    Times of opportunity when the brain and sensory system are receptive to input.

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  • 13

    Communication:Prevention is the Best Medicine

    An ounce of prevention is worth a pound of cure!

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    “But I’m Giving in to Their Behavior.”Meeting someone’sCommunication needs does not equate to “giving in” to behavior…whenthe goal is to createteachable moments by reducing stress andanxiety so the Individualcan learn another functional, effective way of getting their need met.

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    Poll #4Do support strategies that work for people with intellectual disabilities work for people with Autism?

    1. Of course, don’t they all!

    2. No, I need to understand how the person with autism experiences their autism and identify strategies based on the characteristics they experience.

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    See You Next Week!MONDAY, DECEMBER 10 – 9:00AM TO 10:00AM

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  • 14

    AutismHow Autism Differs from an Intellectual Disability and Mental IllnessPart II – December 10, 2018

    P R E S E N T E R :

    M O N I C A M E Y E RM M E Y E R CO N S U LT I N G , I N C .

    H T T P : / / . M O N I C A M E Y E R .CO M

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    Characteristic Skill Deficits

    Symptoms

    Implication for Supports

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    Communication and Language Problems

    SYMPTOMS

    Problems understanding verbal commands

    Limited topics

    Does not communicate own needs

    Delayed processing

    Understanding based on context

    Concrete

    Asks lots of questions

    IMPLICATION FOR SUPPORTS

    Learn the communication strategies the individual is skilled in, visual icons, written, augmentative communication device, etc.

    Learns best through visual structure and routine

    Need to learn power of communication

    Teaching strategies of verbal and imitation not effective

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    Developed by Division TEACCH

    Listen to the Words (or lack of…)“Being unable to talk is NOT the same

    as having nothing to say!”

    •What someone says is not necessarily what they mean•Step back….LOOK at the big picture•Probe for information and comprehension.

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  • 15

    Visual Examples:

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    Schedules

    Steps to Brushing Your Teeth

    1st 2nd 3rd

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    Visual Examples:

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    Communication Strip

    Social Judgment, Social RelatingSYMPTOMS

    Poor eye contact

    Difficulty modulating behavior to settings

    Peculiar affect and not consistent with contact

    Lack of response to other emotions

    Difficulty taking another person’s perspective

    Problems with limitations and boundaries

    Limited social interactions

    IMPLICATIONS FOR SUPPORTS

    Does not learn from watching

    Social narratives; description, perspective, information and direction

    Real life implementation of strategies with proactive supports

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    Developed by Division TEACCH

  • 16

    Cognitive Problems;Difficulty with meanings, abstract thinking, judgment and integrating ideas

    SYMPTOMS

    Concrete, literal

    Slow to process information

    Focus on detail

    Slow pace

    Cannot tell relevant form irrelevant

    Trouble with choices

    Can’t tell clean from dirty

    Indecision

    IMPLICATIONS FOR SUPPORTS

    Extreme problem with generalization, need to teach in each new situation, new people, new materials

    Utilize strategies to minimize problems with judgment

    Give extra processing time

    Highlight important information

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    Developed by Division TEACCH

    Autism Versus an Intellectual Disability

    AUTISM

    Autism cases vary in IQ range, with both below and above average test results and is not a good indicator of skillThere is no typical or standard form of autism and there is often an uneven profile of skills scattered across various developmental areas.Some people with autism have high IQs

    INTELLECTUAL DISABILITY

    Some are considered genius level. This differs from people with intellectual disability who generally have IQs of 70 and below.A person with intellectual disability develops performs slower than his peers but gains skills at an even pace.

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    Both are Life Long Learners!

    Cognitive Problem Examples and Supports:

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    Clean

    Dirty

    Raw

    Cooked

    Choices

    Organizing and Sequencing Problems

    SYMPTOMS

    Does not know where to start, know what is next and when to finish

    IMPLICATION FOR SUPPORTS

    Emphasize visual clarity and systematic or routine ways of doing

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  • 17

    Uneven and/or Scattered Patterns of Development

    SYMPTOMS

    Often good at numbers, rote

    memory tasks and music

    Problems with language and

    abstract reasoning

    Some individuals can read, but are

    not able to speak, don’t make

    assumptions

    IMPLICATIONS FOR SUPPORTS

    Individual approach

    Must assess full range of skills and

    strategies

    Can not assume skills in one area

    based on another.

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    Developed by Division TEACCH

    Restricted Repertoire of Behaviors, Focus on Sameness and Ritualistic Behaviors

    SYMPTOMS

    Upset easily by change in environment, holidays, new clothes, new foods, moving, staff changesFree time difficult

    Memorizes the world

    Easily upset and confusedElaborate rituals

    IMPLICATIONS FOR SUPPORTS

    Work is easier than leisure, downtime, breaks

    Needs predictability

    Routines that are developedCan learn in a positive manner using these deficits to the individuals benefit

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    Developed by Division TEACCH

    Sensory and Perception ProblemsSYMPTOMS

    Inconsistent response to sounds

    Distractible

    Over or under reactive

    Stares at lights

    No or low pain response

    Licks and smells things

    IMPLICATIONS FOR SUPPORTS

    Minimize distractions

    Highlight important elements of environment

    Structure sensory diet strategies throughout the daily schedule

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    Co-Morbid Diagnosis

    Medical, physiological

    Mental Illness

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  • 18

    Co-Morbid DiagnosisIf a co-morbid disorder is present, it often cannot be treated in the same manner as when it is present in a person who is neuro-typical.

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    Co-Morbid Diagnosis

    There are many conditions co-morbid to an autism spectrum disorders ranging from;◦ Concurrent psychiatric conditions ◦ Neuro-inflammation◦ Variety of colon and digestive disorders, which afflict upwards

    of half of individuals with Autism Spectrum Disorder.

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    Co-Morbid Diagnosis

    Bowel diseaseDepression and anxiety disordersBi-PolarFragile X syndromeHyperactivity and attention abnormalitiesIntellectual Disability

    Neuro-inflammation and immune disordersNonverbal learning disorderObsessive-compulsive disorderSeizuresSensory problemsTuberous sclerosis

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    Co-Morbid Diagnosis Generally, before medications are introduced, non-pharmacological interventions should be considered, initialized and evaluated for efficacy.

    Jessica A. Hellings, MD, Department of Psychiatry, University of Kansas Medical Center, Kansas City, KS.

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  • 19

    Some persons with autism may be unable to communicate feelings of illness or pain verbally to caregivers …Interception, the eighth sensory system!

    For example, if we feel thirsty – we get a drink; if we feel full –we stop eating; if we feel cold – we get a sweater; if we feel the need to urinate – we go to the bathroom; if we feel anxious – we seek comfort; if we feel frustrated—we seek help.If we feel that our internal balance is off, we are motivated to act, to seek immediate relief from the discomfort caused by the imbalance.

    When the interoceptive system is properly working, the sensations alert us that our internal balance is off and motivates us to take action, to do something that will restore the balance and help us feel more comfortable.

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    Some persons with autism may be unable to communicate feelings of illness or pain verbally to caregivers…Interception!

    Multiple factors involving illness may manifest as aggression or self-injury, especially if the person is pressured to continue with daily routine or work activities.Common underlying causes of a new onset of behavior problems include infections or side effects of medications. Influenza, ear infections, dental problems, migraine and pain of any kind are a few of the common causes of a re-emergence of problems.

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    When Behavior Surpasses Communication.When communication needs are met and behaviors persist, a Functional Behavior Analysis is necessary to identify other definitions to aggressive, assaultive or self-injurious behavior.◦ Physiologic

    ◦ Pain◦ Gastrointestinal Issues

    ◦ Mental Health Concerns◦ Bi-Polar◦ Obsessive/Compulsivity

    Functional Behavior Analysis are performed by a Psychologist who will help with the development of a Positive Behavior Support Plan.

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    Every effort must be made in these cases to treat the underlying condition medically and provide a supportive environment for the person without adding unnecessary psychoactive agents.

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  • 20

    A Multi-Disciplinary Team A Multi-Disciplinary Team with:◦ Clear understanding of the characteristics of autism,◦ How the individual experiences autism◦ Has training and understanding in best practice “Autism-

    Specific” strategic supportsProven to produce more predictable and successful treatment responses in comparison with simply prescribing drugs for the non-specific diagnosis of "behavioral control."

    Jessica A. Hellings, MD, Department of Psychiatry, University of Kansas Medical Center, Kansas City, KS

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    TreatmentKnowing the characteristics of autism and how it affects the individual

    Key parts of comprehensive treatment programs for Individuals with Autism.

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    There is no “cure” for AutismResearchers are working on finding what specifically causes autism so there is not a cure that will “fix” what is happening with the individuals brain. People with autism grow up to be adults and can get better when characteristics and symptoms are addressed. People with autism can lead happy productive lives when appropriate treatment is begun. (Autism Society of America, 1999)There is no cure for autism, but there are treatments.

    This is where you come in!

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    TreatmentNo two people with ASD are exactly alike Each person with an ASD needs a treatment program to meet his or her individual needs

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  • 21

    The National Institute of Mental Health says;nPsychosocial and behavioral interventions are key parts of comprehensive treatment programs for Individuals with Autism.

    nSome of the most common interventions include:• Applied behavior analysis (ABA)• Antecedent Based Interventions (ABI)• Discrete trial training (DTT)• Early intensive behavioral intervention (EIBI)• Incidental teaching• Pivotal response training (PRT)• Verbal behavior intervention (VBI)• Developmental, individual differences, relationship-based approach (DIR

    also called Floortime)• Relationship development intervention (RDI)• Treatment and education of autistic and communication- related

    handicapped children (TEAACH)

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    Therapies often used with these listed previously: Occupational therapy

    Sensory integration therapy

    Speech therapyThe Picture Exchange Communication System (PECS)

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    The National Institute of Mental Health suggests a list of questions when planning for an individual:•How successful has the program been?•How many have gone on to be included in their community, recreation, leisure, employment•How have they performed?•How are activities planned and organized?•Are there predictable daily schedules and routines?•How much individual attention will the individual receive?

    •How is progress measured?•Will the individual be given tasks and rewards that are personally motivating?•Is the environment designed to minimize distractions?•Can and will the supports be generalized into other environments?•Do staff members have training and experience in working with individuals with autism?

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    An Effective Treatment Program Will Build On; • Individuals interests • Predictable schedule, teach tasks as a series of simple

    steps, actively engage the individual’s attention in highly structured activities• Provide regular reinforcement of behavior• Relationships are a major factor in treatment success.• Those with relationships with the individual need to work

    with therapists to identify the behaviors to be changed and the skills to be taught based on the ASD characteristic deficit.

    CDC and NIMH12/2/18 MONICA MEYER CONSULTING, INC. [email protected]

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    When Is It Too Late to Learn New Skills?Never…Life Long LearnersNo different than you and I

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    [email protected]

    So how do we address these obstacles?Have a good knowledge of autism.◦ Spectrum Disorder ◦ Characteristics of Autism◦ Methodologies and strategies that best support

    individuals with autism

    Understand the person with autism;◦ Likes, Dislikes◦ Strengths, weaknesses

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    Understand the Person with AutismPerson Centered Plan

    ◦ Most effective when used in conjunction with a number of other activities to question service practices and provide direction for innovation.

    ◦ A positive view of people in personal futures planning helps professionals come to know people with disabilities and appreciate their capacities.

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    Understand the Underlying Characteristics of Autism•How does the individual with Autism experience their Autism•What is the implication of Supports?•Have functional communication supports in place and utilized consistently

    •Consistency and training•Data•Clear training and communication with staff

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    Organizational Plans for ImplementationComprehensive Autism Planning System (CAPS);§Allows professionals to know at a glance the goals for an

    activity and what the individual with ASD need to successfully engage in each activity.

    § Completed by a team, CAPS can facilitate independence across settings, activities and people.

    § This tool supports compliance with outlined goals and skill development, while reducing the supporter workload.

    § This is a tool with broad application for children, youth and adults across the Autism Spectrum.

    WWW.OCALI.orgShawn Henry and Brenda Smith Myles

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    [email protected]

    CAPS

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    Time Activity Targeted Skills to TeachStructure/

    Modifications ReinforcementSensory

    Strategies CommunicationSocial Skills

    Data Collection

    Generalization Plan

    Communication and Self-DeterminationCHOICE! How can a person with autism make a choice when there is a need for functional communicate or lacks the ability to make decisions?RESPONSIBILITY! With choice comes the responsibility for ones actions and decisions.Strategies that enhance the possibility for a person with Autism to make decisions and act responsible for ones life are:

    ◦ Structured Teaching◦ Communication Systems◦ Social Stories◦ Positive Behaviors Supports

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    Now what?Get to know this person in relationship to the characteristics and Supports strategies◦ Relationship◦ Assessment◦ Strengths◦ Skill Development – Life Long!◦ Strategies◦ Implementation◦ Evaluation◦ Re-assessment◦ Data

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    http://WWW.OCALI.org

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    Thank you!

    MONICA [email protected]

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    [email protected]

    http://www.monicameyer.commailto:[email protected]