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Autism Basics Bev Long Diagnostic Center, Central California.

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1 Autism Basics Bev Long Diagnostic Center, Central California

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3 Autism research and publishing is at an all time high

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5 Overview

6  Autism is a life-long developmental disorder that seriously affects the way individuals communicate and interact with those around them.  It usually manifests itself during the first three years of life.  Autism is a “spectrum disorder,” meaning that its symptoms and characteristics can present themselves in a variety of combinations, ranging from mild to quite severe.

7  Impaired communication and social interaction are the most fundamental symptoms of autism.  As many as 50% of individuals with autism are non- verbal and up to 80% are intellectually challenged.  A small percentage is gifted with extreme artistic, intellectual or technical ability.  Common behaviors include: seemingly purposeless repetitive behavior seemingly purposeless repetitive behavior unusual responses to people unusual responses to people attachments to objects attachments to objects resistance to change resistance to change extreme sensory sensitivity. extreme sensory sensitivity.

8  Currently 1 in every 250 children are diagnosed with autism.  1.5 million people with autism in the US.  Autism is the fastest growing developmental disability. In the US, autism increased by 172% during the 1990’s.  33% of children also have a seizure disorder.  Autism spectrum disorders are now more common than Down Syndrome, childhood cancer, cystic fibrosis, multiple sclerosis, blindness and deafness.

9  Only mental retardation and cerebral palsy rank ahead of autism as a developmental disability.  Families with one autistic child have a 2-8 percent chance of having another autistic child.  Boys are 3-4 times more likely to be diagnosed with an ASD.

10  There is no definitive cause or cure for autism, but current research suggests a genetic base to the disorder and links it to neurological differences in the brain.

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12 Controversy over incidence: Labeling or Epidemic???  As the numbers of students classified as autistic increases, the number of students classified as mentally retarded and learning disabled has decreased.  Institutions such as the Mind Institute at Davis believe that reclassifying and/or broadening the definition of autism cannot in any way account for the increase in the number of children being diagnosed.

13 PDD Childhood Disintegrative Disorder Rett Syndrome

14 Real Kids…The range  The child with no eye contact, no means of communication, no awareness or others around him. Absent. Classic Autism.  The child who is aware of others in the environment, may or may not have some words, watches, but does not interact.

15 The Range…  The child who approaches others in odd, non- productive ways. Unexpected touching, standing too close, uncomfortable eye contact. High functioning autism.  The child who desires social contact, can even talk about feeling sad that he doesn’t have friends...seems “clueless,” talks too much, doesn’t consider the listener’s desires, doesn’t read other’s body language. Asperger Syndrome.

16 Two Categories of Causes of Autism Internal Causes   Genetic – recent genome Project shows that as many as genes may be involved.   Congenital – condition that just occurs as the nervous system of the unborn or young child develops External Causes Environmental – child is exposed to a specific environmental element (toxin) before birth or during infancy that causes pervasive changes or damage to the nervous system.

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18 Genetic Predisposition Congenital factors Environmental factors Autistic Spectrum

19 Misconceptions  Autistic children never have eye contact  Autistic children don’t have feelings or emotions  Autistic children don’t smile or seek physical comfort  Autism is a mental disorder  Autism is caused by bad parenting  Autistic children choose to be difficult to annoy parents and teachers

20 We are talking about students who are:  Somebody’s child  Somebody’s grandchild  Somebody’s sister or brother  Somebody who is loved and for whom many tears have been shed

21 Early Signs

22 Signs that may be seen in infancy as early as 8 months  Two kinds of autistic babies: Placid, undemanding baby who rarely cries Placid, undemanding baby who rarely cries Screaming baby who is difficult to pacify Screaming baby who is difficult to pacify  Peculiarities in gaze: Avoidance of eye contact Avoidance of eye contact Gaze may be brief and out of the corner of the eye Gaze may be brief and out of the corner of the eye Fails to shift gaze from object to person Fails to shift gaze from object to person

23  Peculiarities of hearing: May appear deaf but have normal hearing May appear deaf but have normal hearing Unaffected by audible changes in the environment Unaffected by audible changes in the environment May be fascinated by particular sounds May be fascinated by particular sounds Common sounds may cause distress Common sounds may cause distress

24  Peculiarities in social development and play: Lack interest in early social interaction with parents Lack interest in early social interaction with parents Lack of shared interest Lack of shared interest Do not take an active part in baby games Do not take an active part in baby games

25  Rocking  Head banging  Scratching or tapping blanket  Fascination for shiny or twinkling objects  Fixated on an object such as a piece of string

26 Red Flag Biggies  Does not babble or coo by 12 months of age  Does not gesture (point, wave, grasp) by 12 months of age  Does not say single words by 16 months of age  Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age  Has ANY loss of ANY language or social skill at ANY age

27 History

28 1911  Eugen Bleuler, a Swiss psychiatrist first coined the term “autism.” He applied the term to adult schizophrenia.

29 1943  Dr. Leo Kanner of Johns Hopkins University described autism for the first time. He based his discovery from 11 children he observed between 1938 and He grouped these children because they “withdrew from human contact” as early as age 1.

30 1944  Austrian psychiatrist Dr. Hans Asperger describes a disorder that later becomes known as Asperger disorder. Viennese physician.  Published “Autistic Psychopathology in Childhood” in 1944, one year after Kanner.  Because of war, he probably didn’t know of Kanner’s work.  He believed in a biological, rather than a psychological cause.  He described verbal youngsters with milder symptoms

31 1940’s – 1960’s  The medical community felt that children who had autism were schizophrenic. This lack of understanding of the disorder led many parents to believe that they were at fault.

32 Bruno Bettelheim  During the 1950s and 1960s, the medical establishment, thanks to Bruno Bettleheim, blamed autism on the child's mother for failing to bond with her child. These mothers were called a "refrigerator mother." Thousands of autistic children received gloomy therapies based on this theory. Many children were taken away from their parents. Their mothers endured a difficult period of blame, guilt and self-doubt. "the precipitating factor in infantile autism is the parent's wish that his child should not exist."

33 1964  Dr. Bernard Rimland further delineates the clinical features of autism. Specifically, he provided a definitive review of the empirical evidence which established that autism was a biological disorder.

34 1966  Dr. Andreas Rett first describes Rett disorder as a distinct clinical condition.

35 1977  Sir Michael Rutter and Dr. Susan Folstein published the first autism twin study, revealing evidence for a genetic basis for autism. Both Sir Rutter and Dr. Folstein have made major contributions to further refining the clinical phenotype associated with Autistic Disorder and Pervasive Developmental Disorders.

36 1978  Drs. Michael Rutter and Eric Schopler continue to publish and redefine the signs and symptoms of autism.

37 1981  Asperger's syndrome was named by Lorna Wing in a 1981 medical paper, after Dr. Hans Asperger, an Austrian psychiatrist and pediatrician who would not be recognized internationally until 1990.

38  Multiple research studies published showing evidence for a genetic basis for autism.

39 1991  Autism Diagnostic Interview published by Drs. Catherine Lord, Sir Michael Rutter, and Ann Le Couteur.

40 1992  American Psychiatric Association refines the diagnostic criteria for Autistic disorder.

41  Multiple case reports of individuals with chromosome 15 anomalies observed in children with autistic disorder.

42 1998  First report of genetic linkage on chromosome 7q for Autistic disorder and first genomic screen -- IMGSAC.

43 Theory of Mind Thinking About Thinking

44 Theory of Mind  So commonplace that until recently we haven’t investigated it at all.  The ability to think about other people’s thinking…and, further, to think about what they think about our thinking…and, even further, to think about what they think we think about their thinking, and so on….

45 Theory of Mind..say it another way…  The ability to appreciate that other people have mental states: Intentions Intentions Needs Needs Desires Desires Beliefs Beliefs  And these may be different than MINE!!

46 The Sally / Anne Test  Designed by Simon Baron-Cohen in 1985  Experiment carried out with: Normal 4 year olds Normal 4 year olds Children with Autism, older than 4 Children with Autism, older than 4 Children with Down Syndrome with mental ages of 4 Children with Down Syndrome with mental ages of 4

47 Sally / Anne Test

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50 What Did We Learn?  By 4 years, normally developing children know that Sally will guess that the marble is in the basket.  Developmentally delayed, non-autistic children know when their mental age is 4.  Autistic children do not understand until much later (rarely younger than 11). They will say that Sally will guess that it is in the box.

51  More able children develop a superficial understanding by 9-14 years of age.  May never reach the stage of knowing that others not only have thoughts and feelings, but that they can reflect on these. Autism and ToM

52 Implications of Theory of Mind Impairments

53 Problems Understanding the Perspectives of Others.  Can’t “stand in another’s shoes.”  Can’t imagine what another person is thinking.  Can’t guess about how or why a person will respond/act.

54 Problems Understanding how Others Think and Feel  May have no connection between their actions and others’ reactions to them.  Can’t imagine that others think about them.  Don’t understand that others remember things about them.

55 Problems with Joint Attention and Other Social Conventions  No sharing of attention..leads to idiosyncratic references.  Difficulty with turn taking.  Poor topic maintenance.  Inappropriate eye contact.

56 Difficulty Understanding Emotions  May only understand a limited number of emotions.  There is little understanding of subtleties.  They have difficulty even recognizing their own feelings.

57 Difficulty explaining own behaviors  Even highly verbal individuals will have difficulty explaining why they did something….that requires one to think about motivation and intention.

58 Difficulty predicting others’ behavior or emotional states  Have no idea how someone will act or feel.  Do not see the connection between what is happening and how someone may act.  Leads to fear and avoidance of other people.  Preference for activities that do not depend on others.

59 Difficulty Reading the Intentions of Others  Do not know the difference between being laughed at and being part of the joke.  Do not understand when they are being taken advantage of.  Inability to deceive, or to understand deception.

60 Other Problems  Difficulty Understanding ‘Pretend.’  Difficulty differentiating Fact from Fiction.  Inability to read and react to the listener’s level of interest in what is being said.  Difficulty taking into account what other people know or can be expected to know, leading to pedantic or incomprehensible language.

61 SENSORY DIFFICULTIES  40% of children with autism have sensory difficulties  Students have difficulty modulating responses to sensory input Over-responsivenessUnder-responsiveness  Maintaining optimal arousal & attention

62 What Might I See These Students Do?  They may be intimidated or over stimulated by the large numbers of other students.  They may be confused by the movement of others.  They may become disoriented.  They may be overwhelmed by the sounds of others (especially in the cafeteria/gymnasium).

63 What Might I See These Students Do?  They may be uncomfortable in hallways if they are brushed up against by others.  They may do unusual things such as rub their hands on the walls, hold their bodies in strange positions, touch others inappropriately or make unusual sounds.  They may cry or scream for no apparent reason.  They may walk through groups of students.

64 What Might I See These Students Do?  Isolate themselves completely.  May be overly “friendly” and have very poor boundaries or social skills.  Talk obsessively about the same topic to anyone (or no one).  Tell others inappropriate things such as, “you are too fat.” “you have a bugger on your nose.” “My mom says that you are stupid.”

65 Why????? Because…..  Their sensory systems are disordered...some senses are overly acute, some are under reactive. Touch may HURT, movement around may disorient.  They do not interpret social information…they may not realize that three people talking together are in a group...may be unable to read facial expressions and body language…may not recognize unkind behavior.

66  Language is disordered. They may not understand even simple directions or questions. They may be unable to respond with words to even the simplest requests.  They strongly desire for things to remain predictable and familiar so they may do things that are repetitive and familiar even if there doesn’t seem to be a reason for the action or behavior.

67 How can we work together as a team?  Parents and teacher could work together to create an info sheet for each student that could be given to every adult on campus. Adults such as bus drivers, cafeteria workers, yard duty staff, office staff, etc. who are most likely to come into contact with students could even keep the sheet with them on a clip board.  More sophisticated students could write their own info sheets with some guidance.

68 Suggested Info Sheet for a lower functioning student Name : Robert Oliver I like to be called Robbie Please don’t touch me when I am upset I understand very little speech. Say my name and then say, “come,” or “stop,” or “no.” If I am crying or screaming, I will usually stop if you tell me, “Robbie, go library.” I love to look at books about dinosaurs. If I come and stand by you on the campus, it is because I feel safe with you. If I start to smell your hair, I am telling you that I like you. Put your hand up and say, “No smell hair.” You might have to do it more than once

69 Suggested Info Sheet for a Higher Functioning Student  My name is Brad Johnson. I am 15 years old.  I am very intelligent and love to talk about things that interest me. These include: Dairy cows; Star Wars; the Civil War battles and the California Gold Rush. If you want me to stop talking about one of these topics, please tell me that you want to talk about something else.  Please don’t make me look at you when you are talking to me. It makes me very anxious.  I understand that when I am challenged, I can get very verbally aggressive. This often leads to trouble with peers. If you hear this happening, please tell me to, “choose your battles carefully.”  If I am standing too close to you, please tell me to back up a little.  When I am very upset, it is hard for me to listen, talk or cooperate. Please tell me to find a place to sit so that I can calm down. I will try to do it.

70 Communicating with Children to Enhance Language Development Strategies that all adults can use when communicating with autistic children to facilitate language learning.

71 Guidelines for Communicating  Adjust the complexity of your language to the level of the child (how you talk and what you talk about)  Avoid excessive talking – speak in clearly articulated utterances.  Attempt to get the child’s attention before beginning to speak  Use a calm, well modulated voice.

72 Guidelines for Communicating  Talk about relevant topics to a child. What s/he is doing or attending to What s/he is doing or attending to What s/he is about to do What s/he is about to do What s/he had just done What s/he had just done Events s/he is familiar with Events s/he is familiar with  Use repetition, redundancy and paraphrasing.  Don’t be fooled by immediate and delayed echolalia, such utterances typically do not represent true language levels. However echolalia may be used with clear intention to communicate.

73 Guidelines for Communicating  Use buildups and breakdowns to help your child learn about language structure. Buildup: Put on. Shoe on. Put shoe on. Buildup: Put on. Shoe on. Put shoe on. Breakdown: “Take your spoon and eat the cereal.” “Take spoon, spoon (with point) take cereal, eat cereal.” Breakdown: “Take your spoon and eat the cereal.” “Take spoon, spoon (with point) take cereal, eat cereal.”

74 Guidelines for Communicating  If possible, synchronize and relate your utterances to objects, actions, and events in the environment through gestures, touching, and action demonstration.  Clearly segment your utterances by using stress, intonation and pause.  Use gestures to supplement speech.

75 Guidelines for Communicating  Act as an interpreter to facilitate peer interactions Coach peers by telling them about the child with autism and how to facilitate communication: Coach peers by telling them about the child with autism and how to facilitate communication: Getting child’s attentionGetting child’s attention What to talk aboutWhat to talk about How to respondHow to respond How to persistHow to persist

76 Guidelines for Communicating Shadow the child with autism Shadow the child with autism Point out a peer’s social behaviorPoint out a peer’s social behavior Prompt child in how to respond to peers; behaviorPrompt child in how to respond to peers; behavior Encourage perspective-takingEncourage perspective-taking Acknowledge feelingsAcknowledge feelings Pointing out feeling in peersPointing out feeling in peers Prompting how to respond to peers’ feelingsPrompting how to respond to peers’ feelings

77 Sometimes students “appear” to understand language that they don’t---how?  Familiar routines (child hangs up coat upon entering the home or classroom)  Environmental cues child goes to kitchen table when adult opens refrigerator – action cue child goes to kitchen table when adult opens refrigerator – action cue Child gets a ball when the ball is on the floor in a room – object cue Child gets a ball when the ball is on the floor in a room – object cue  High probability events Child brushes his teeth when given a toothbrush Child brushes his teeth when given a toothbrush Child starts working on a puzzle when he is given one. Child starts working on a puzzle when he is given one.

78 Sometimes students “appear” to understand language  Specific elements or words in an utterance rather than the whole utterance Adult: “Now it’s getting late; go to your room and go to bed.” If child responds, it may only be to “bed.” Adult: “Now it’s getting late; go to your room and go to bed.” If child responds, it may only be to “bed.”  Intonational, gestural, and/or nonverbal cues. Adult: “Get the brush.” (said while pointing to the brush) Adult: “Get the brush.” (said while pointing to the brush)

79 Increasing Motivation to Communicate  Arrange physical environment to increase child’s need to communicate.  Use the child’s toy, object and activity interests as opportunities to initiate communication.  Use the child’s social interests as opportunities to initiate communication  Reinforce all attempts to communicate: accept any and all communicative means

80 Increasing Motivation to Communicate  Make sure that the naturally occurring activity or interaction employed is pleasurable.  Identify adults or peers who have successful interactions with the child and utilize their interactive strategies.  See every moment as a potential opportunity to build communicative interactions.

81 Strategies  Adult should follow child’s lead by imitating child’s behavior and attuning to child’s display of affect.  Use proximity in positioning and presentation of materials to enhance social referencing.  For low rate communicators, design environments to provide many communicative opportunities to increase child’s rate of communicating; make sure that others wait and look expectantly at child.

82 Strategies  For children with adequate rates of communication, provide natural opportunities for repairs by holding out for a repetition or modification of communicative signal.  Provide natural opportunities to “up-the-ante” by holding out for more sophisticated means to express communicative functions which are solidly established in child's repertoire.

83 What about behavior problems?  The first rule in supporting students is to provide the structure, predictability and level of visual support that they require while supporting their communication, social and sensory needs.  In general, when there is a problem….refer to the next slide.

84 Be Gentle During a Crisis  Lower your voice  Be calm  Be comforting  Talk less-be concrete  Have a soft, relaxed body posture  Have a neutral facial expression

85 Adult behaviors that can Escalate a Crisis  Raising voice/yelling  Preaching  Backing a student into a corner  Using tense body language  Using sarcasm  accusing  Insisting on having the last word.  Holding a grudge  Acting superior  Using physical force  Mimicking the child  Commanding, dominating  Insulting  Nagging  Humiliating  Making comparisons with other  Confiscation of preferred or comforting object or activity No No’s!!

86 What Should I Know if I Have a Student with Asperger Syndrome in my Classroom? Intricate Minds- a video designed to help us understand what it would be like to have Asperger Syndrome

87 Characteristics that Impact Performance in the Classroom  Impairment in communication Literal use of language Literal use of language confused by expressions—”cat got your tongue”confused by expressions—”cat got your tongue” confused by shades of meaning/ambiguityconfused by shades of meaning/ambiguity expansive vocabulary often hides poor understandingexpansive vocabulary often hides poor understanding Impairment in language ‘pragmatics’ Impairment in language ‘pragmatics’ lack of reciprocity in conversation--talks ‘at you’lack of reciprocity in conversation--talks ‘at you’ misses non-verbal cues (body language)misses non-verbal cues (body language)

88 Characteristics that Impact Performance in the Classroom  Impairment in social interaction difficulty negotiating with peers difficulty negotiating with peers anxiety in social (group) situations anxiety in social (group) situations cognitive rigidity makes ‘switching gears’ difficult cognitive rigidity makes ‘switching gears’ difficult wants friends but doesn’t know the ‘rules’ wants friends but doesn’t know the ‘rules’ often an easy target for bullying due to naïvety often an easy target for bullying due to naïvety

89 Characteristics that Impact Performance in the Classroom  Restricted repetitive and stereotyped patterns of behavior, interests and activities self stimulation activities such as rocking, spinning, arm flapping, etc. self stimulation activities such as rocking, spinning, arm flapping, etc. intense all-consuming preoccupation with a narrow subject, ie, trains, dinosaurs, TV characters intense all-consuming preoccupation with a narrow subject, ie, trains, dinosaurs, TV characters intense need for routine and consistency with anxiety when routines are not followed intense need for routine and consistency with anxiety when routines are not followed

90 “An Anthropologist from Mars”  Analogy for Asperger’s Syndrome  Coined by Temple Grandin in an Oliver Sachs story  People with AS often feel “out of phase” or like “aliens” or “changelings”  “Social Blindness”

91 The “NT” world baffles individuals with AS “ Why don’t we say what we mean?... Why do we so often make trivial remarks that mean nothing at all? Why do we get bored and impatient when someone with [AS] tells us hundreds of fascinating facts about [arcane topics]... Why do we care about social hierarchies--why not treat everyone in the same way?...why are we so illogical compared to people with [AS]” Lorna Wing, in Attwood, 1998 p.9. “ Why don’t we say what we mean?... Why do we so often make trivial remarks that mean nothing at all? Why do we get bored and impatient when someone with [AS] tells us hundreds of fascinating facts about [arcane topics]... Why do we care about social hierarchies--why not treat everyone in the same way?...why are we so illogical compared to people with [AS]” Lorna Wing, in Attwood, 1998 p.9.

92 Accommodating the environment for AS  Establish routines  Establish clear expectations  Use visual supports (lists, calendars)  Decrease stress  Supervise unstructured time  Develop ‘circle of friends’  Work collaboratively with parents

93 Use of class rules-clear expectations  Concrete rules for the class/group Displayed prominently Displayed prominently Referred to frequently (“Our rule is... “) Referred to frequently (“Our rule is... “) Adapted when needed, with advanced notice/warning Adapted when needed, with advanced notice/warning  Clearly state expectations. Make directions explicit.

94 Visual supports and schedules  Individual written schedule (daily/weekly)  Visual sequencing of tasks  Visual calendars  Written/drawn notification of change

95 Change – Luke Jackson “At school everything changes so often. Going into a classroom to find that we then have to join another class because the teacher is off, or move desks for no apparent reason, all adds to the hassle of school.” “At school everything changes so often. Going into a classroom to find that we then have to join another class because the teacher is off, or move desks for no apparent reason, all adds to the hassle of school.”

96 General Principles of Social Skill Development for Students with AS  Believe that any/every moment could be used as the context for social skill training. The more broad- based and frequent the cues and feedback are given, the more likely the student will integrate new skills.

97 General Principles of Social Skill Development for Students with AS  Provide social information that is explicit and “rule based.” The more universal and functional, the better.  Provide explicit social interaction skill instruction.  Constantly work toward generalization by providing varied examples, role plays and by prompting, and giving helpful feedback.  Create cues to help the child remember the rule.

98 General Principles  Teach parents, professionals and peers how to support the social development of the student with AS.  Assist parents, professionals and peers in developing & maintaining reasonable social skills expectations.  Teaching a target skill without teaching the prerequisite skills can be the difference between a rote skill and a usable integrated skill.

99 Neurology If the human brain were so simple that we could understand it, we would be so simple that we couldn't. - Emerson M Pugh

100 Head size  Children with autism experience unusually rapid head growth between 6 and 14 months. Is this an overgrowth of neuronal connections? Is this an overgrowth of neuronal connections? In normal development the brain clears out biological debris as it forms new circuits. “Little twigs fall off to leave the really strong branches.” In normal development the brain clears out biological debris as it forms new circuits. “Little twigs fall off to leave the really strong branches.” In kids with autism, this pruning process may go awry In kids with autism, this pruning process may go awry

101 Head size, con’t  Brain size decreases slightly around age 12, at the same time that normally developing children experienced a growth spurt in cerebral volume.  By adolescence and adulthood, brain volume levels out to normal size.  These are unusual and perplexing findings.

102 Amygdala  The amygdala is enlarged in the autistic brain- puzzling as this region of the brain is involved in the normal expression of emotion, which is so disordered in this population.  The amygdala is the seat of anger and fear. It may help us understand the fearful reactions that many children have to typical situations (anxiety).

103 Minicolumns 2002  A minicolumn is a basic organizational unit of brain cells and connective wiring, allowing a person to take in information, process it, and respond.  Differences in size, number, shape or location of minicolumns could effect the way the brain processes information.  In the brains of autistic people, there are minicolumn abnormalities in the frontal and temporal lobes They are significantly smaller They are significantly smaller There are more of them There are more of them

104 Axons  Brain cell are linked by axons –long cables insulated with myelin- that form the white matter.  In autistic people, there are too many cables within local areas, but not enough links from one region to another.  Too many local connections, not enough long distance..

105 Broca’s area Pars opercularis Motor cortexSomatosensory cortex Sensory associative cortex Primary Auditory cortex Wernicke’s area Visual associative cortex Visual cortex

106 Frontal lobes  This is the home to higher reasoning.  They are greatly enlarged, due mainly to excess white matter, the brain’s connector cables.

107 Cerebellum  Like the frontal lobes, is overloaded with white matter.  This region plays a key role in physical coordination, motor planning and anticipating events.

108 Corpus callosum  Undersize.  This band of tissue links the left and right hemispheres of the brain.  Activity across diverse regions of the brain is poorly coordinated.  “More like a jam session than a symphony”.

109 Hippocampus  About 10% larger than normal. This area is vital to memory.  Maybe it becomes enlarged because autistic children rely on memory to interpret situations that most people process elsewhere.


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