I was filling Lisa in on some of our special-needs lingo the other day and it occurred to me, we need a tutorial, a cheat-sheet and glossary, for all those terms and acronyms we use every single day that seem to baffle the typical parents. So here's what I have. Some are a little more scientific, and not so much mentioned in my everyday chats with friends, but I've included a few of them anyway.
I also thought it might also be useful to give a few important facts for autism. I know they're in the media all the time, "1 in 110 children," but do you know how quickly these numbers are growing?! Do we realize how much money this is costing until we have some more answers or solutions for everyday living? Anyway, a little reminder of the pertinent facts never hurts.
And I have a few points that I want to get across to all parents of "typical" children. These facts are a big deal to me and are a Need-To-Know.
1. Please don't call our kids "autistic." Not all of us, but most of us, a really large number of us parents, don't like this term! Our children are sweet, caring, sensitive, funny, silly, smart, cute, intelligent, and... they have characteristics consistent with the autism spectrum. It does not define them as people. I don't call your child with glasses, the "myopic kid." Or think of how that is taken when used with race. They are children with autism, not "autistics," (as an adjective or a noun). This is more of a pet-peeve than completely offensive, but it's the first step to tolerance and acceptance for a disability. .
2. Autism does not equal low intelligence or iq. Autism does not mean dumb! I've even had family members say, "Asperger's is the 'smart autism.'" This is not true. Autism and Asperger's are both on the Autism Spectrum, but are two different types of the disorder. One is not more intelligent than the other. Individuals with autism can have extremely high intelligence, they just think differently and learn differently. One perfect example in the public is Dr. Temple Grandin. Another example in our personal life is with Charlie's newest ABA therapist, she has a brother with autism. He's 21, he's in a fraternity, has a girlfriend, and he just got an internship with NASA! (But his parents once wondered if he'd ever be invited to a birthday party!!)
3. Your child's reaction and acceptance of a child with special-needs often mirrors your own. If you wince or cringe at the behavior or appearance of a child with special-needs, your child notices and learns. If you stare at the child with autism at the birthday party, your child will see this. If you pull away when approaching a child with special needs, your child will emulate this. Your child's understanding and knowledge of all other children with all abilities reflects yours. There are children on the playground who go up to the kids with autism and freely say "Come play with us!" And then there are those who say, "That kid is weird!" The world is a better place with the grown-ups like that first kid! And your child may come away with a very dear friend!
I will never forget the day in preschool, Charlie was just three, and I saw another boy back away from Charlie as he said, "That boy is weird!" My heart broke that instant! Or the time at a birthday party, Charlie was also three, and my unmentioned friend's husband was staring disparagingly at Charlie doing his "happy dance." But at the same time, Charlie's friend Maya always comes to mind: she somehow finds every child in the park with special needs and befriends them. Or little Sam, also in Charlie's first preschool, who was in the "SRLDP" or "typical" class next door; I came early to pick Charlie up one day and Sam was giving Charlie a ride on the back of his trike. I said something to which three-year-old Sam replied, "Charlie is my friend." Those children are the truly special kids who will be and have wonderful friends!
4. Just because we may say some things does not mean we are "in denial." A few examples of this may be:
"My child (with autism) is so smart."
The Autism Parent's Fact: Children with autism may have extremely high intelligence. Because they have difficulty communicating or learning in a conventional environment, they are often mistaken for lacking intelligence or having a low iq. Parents of children with autism understand their children when no one else can, and can see through their difficulties to know how smart they really are.
"My child should be in general education."
The Autism Parent's Fact: We know our child needs special attention and has learning deficits. Some of us just strongly believe that inclusion in general education is the most positive and most beneficial educational environment, while addressing the child's needs through additional help and therapy. We are not saying that he is just the same as all the other typically-developing children.
"My child is social."
The Autism Parent's Fact: We realize our child socializes differently than the typical child. We realize that he speaks differently or plays differently. But if he is seeking the company of another child, or shows interest in his peers, or emulates another child, we are thrilled. To us, he is being social!
"My child doesn't fit autism."
The Autism Parent's Fact: There are no two faces of autism that are alike. We each see in our children the strengths that may not fit the stereotypical characteristics of autism. That one characteristic is just one of the many criteria that it takes to be on the spectrum, while he may fit all of the other characteristics of a child on the autism spectrum.
And...
Please don't say "These kids often..." when referring to our children with autism and the characteristics. We know our child is on the spectrum. We are not "in denial." We know what the characteristics are. We just want you to look at our children as individuals, with their own strengths to be capitalized on, and their own deficits to be addressed, not lump them into the general characteristic pool!
Autism Facts At A Glance
Autism is an umbrella name for a family of disorders that begin in childhood, last a lifetime and disrupt a person's social and communication skills. Autism is one of the five pervasive developmental disorders (PDD), which are characterized by widespread abnormalities of social interactions and communication, and severely restricted interests and highly repetitive behavior. These symptoms do not imply sickness, fragility, or emotional disturbance.
Prevalence
• It is now 1 in 92 births in U.S. is diagnosed with autism. Boys are four times more likely than girls to have autism. ("Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network, United States, 2006." Department of Health and Human Services, Centers for Disease Control and Prevention. Morbitity and Mortality Weekly Report, 18 December 2009.)
• 1 million to 1.5 million Americans have an autism spectrum disorder (Based on the autism prevalence rate of 1 in 150 (Centers for Disease Control and Prevention, 2007) and 2000 U.S. Census figure of 280 million Americans.)
• 1% of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.
• It is the fastest-growing developmental disability; 1,148% growth rate! (“Autistic Spectrum Disorders: Changes in the California Caseload, An Update June 1987 and June 2007.” Cavagnaro, Andre T., California Health and Human Services Agency. State of California 2003 survey of developmental disabilities.)
• 10 - 17 % annual growth.(Autism Society estimate based on 2003 US state educational data.)
• 1% of the adult population of the United Kingdom has an autism spectrum disorder.(Autism Spectrum Disorders in adults living in households throughout England," Report from the Adult Psychiatric Morbidity Survey 2007, a survey carried out for the United Kingdom NHS Information Centre for health and social care.)
Diagnosis
• Less than a decade ago, the disorder was diagnosed at age 3 or 4. Now it is routinely diagnosed at 2. It was first named and characterized in 1946, before this it was commonly referred to as infantile schizophrenia.
• Symptoms can vary and range from mild to severe.
• Symptoms can vary and range from mild to severe.
• Symptoms must fit a list of criteria known as the DSM-III, DSM-III-R, or DSM-IV, the "Diagnostic and Statistical Manual"
Treatment
• There is no single treatment for children with autism. There is no "cure." Most respond best to structured behavioral programs and "therapies."
Cost
• Lifetime cost of caring for a child with autism: $3.5 million to $5 million
• Annual U.S. cost: $90 billion
• UK: $60 billion annual cost.(Autism Society estimates based on UK study by Jarbrink K, Knapp M, 2001, London School of Economics: "The economic impact on autism in Britain," 5 (1): 7-22.)
• 60% of costs are in adult services. (Autism Society estimate.)
• Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention. (Government Accounting Office Report on Autism 2007.)
• In 10 years, the annual cost will be $200-400 billion. (Autism Society estimate.)
• The cost of autism over the lifespan is 3.2 million dollars per person. (Arch Pediatric Adolesc Med. 2007;161:343-349.)
• The cost of caring for a child with autism, through education and special services from age 2 to 18 (while living with their parent), so that they will have a better chance to support themselves, is far less than the cost of supporting an adult with autism from age 18 to 70.
Terms and Acronyms: (I've put the commonly-used ones in blue.)
ABA "Applied Behavior Analysis" or "Behavioral Therapy" Acronym in common use by adherents of some behavioral techniques to refer to a kind of careful analysis and tracking of behavior including its cues and consequences. A therapy.
ABC a term used in ABA (See above) Refers to the course of analyzed events: antecedent, behavior, and consequence
ABC "Autism Behavior Checklist" Diagnostic device for autism.
AC "Autism and cousins" People with autism and those who may not be formally diagnosed but may have some elements of atypical thinking. As far as I know, this usage is confined to the Autism list.
ADA "Americans with Disabilities Act" USA law that ensures rights of persons with disabilities with regard to employment and other issues.
APE or Adaptive PE "Adaptive Physical Education." Physical therapy or education in school. A therapy.
ADD "Attention Deficit Disorder"
ADHD "Attention Deficit Hyperactivity Disorder"
ADI "Autism Diagnostic Interview" a diagnostic scale for autism being developed by the Medical Research Council in London. Fairly technical: more precise than CARS.
ADOS "Autism Diagnostic Observation Scale" (or "Autism Diagnostic Observation Schedule"?) Fairly technical test.
AGRE "Autism Genetic Resource Exchange" Program run by CAN foundation to collect & review DNA samples.
AIT "Auditory Integration Training"
ASLA "Autism Society of America, Los Angeles Chapter" They hold an annual conference often referred to as the ASLA conference.
ANC "Autism National Committee"
Aphasia A loss of ability to use or understand words.
Apraxia A neurologically-based disorder which occurs in adults, often (but not exclusively) as a consequence of stroke. The person has difficult sequencing movements in the service of a goal. e.g., he may have the ability to raise his arm and to wave his hand, but not when he consciously intends to do so. Apraxia may be specific to speech (e.g., "apraxia of speech") or to the movement of other body parts (e.g., "limb apraxia").
Apraxia of speech (see definition of "apraxia")
ARI "Autism Research Institute"
ARRI "Autism Research Review International"
AS "Asperger's Syndrome"
ASA "Autism Society of America"
ASD "Autism Spectrum Disorders" (see below)
ASL "American Sign Language"
Atypical autism A general term for conditions that are close to but don't quite fit the set of conditions or autism or other specific conditions. See "PDD-NOS"
AUTCOM "Autism National Committee"
Autistic savant an individual with autism who displays incredible aptitude for one or two skills.
Autism Spectrum Disorders Term that encompasses autism and similiar disorders. More specifically, the following five disorders listed in DSM-IV: Autistic Disorder, Aspergers Disorder, PDD-NOS, Childhood Disintegrative Disorder, and Retts Disorder.
BII Behavioral Interventionist
Behavioral Therapy Another term for ABA. A therapy. If has been mistakenly referred to as the Pavlovian therapy, but is really just the practice of shaping behaviors.
BRI "Behavioral Research Institute" see JRC.
CARS "Childhood Autism Rating Scale" A test developed at TEACCH to diagnose autism. The child is rated in 15 areas on a scale up to 4 yielding a total up to 60, than ranges are considered to be non-autistic, autistic, and severely autistic.
CDC "Center for Disease Control"
US Government agency.
CF or c/f "casein free" diet restricting casein or dairy products
CFF "Community Care Facility"
CHAT "Checklist for Autism in Toddlers" A checklist to by used by General Practitioners at 18 months to see if a child has Autism. Described in Baron-Cohen S; Allen J; Gillberg C. "Can autism be detected at 18 months? The needle, the haystack, and the CHAT." British Journal of Psychiatry, 1992 Dec, 161:839-43. (UI: 93130306)
Cluster Used to label an unusually large number of occurrences of a disease or condition in one place. An "autism cluster" would be an unusually large number of cases of autism in (perhaps) a single locality. Clusters constitute evidence in the search for causes of diseases and conditions. In early 1999, an autism cluster was reported in the Brick Township of New Jersey.
CA/T or Community Access/Transition In special education, a program typically for students who are 19 years of age and older. Instruction is based on those skills required once a student leaves the school system. While the IEP team may develop reading, writing and math goals, these skills are usually taught in context of real of life situations, e.g. shopping, using a library, cashing a pay check, applying for a job
DAN "Defeat Autism Now" Also "DAN!". Also DAN Doctor. Also "DAN! Doctor". A physician who subscribes to the DAN protocol and attended a DAN Conference. Also DAN Protocol Also "DAN! Protocol". A protocol for the assessment of the underlying disorders that is causing the autism. It is the result of the DAN conferences.
DAS "Developmental Apraxia of Speech"
DD "Developmental Disabilities"
DH "Developmentally Handicapped"
DIS or Designated Instruction and Services part of special education, services allowing students with disabilities eligible for Special Education to participate in their educational program to the highest extent possible. Services may be provided through: Consultation including training to guardian(s)/school staff, Collaboration i.e. team teaching, Direct service to the student including individually and in a group
DTM Discrete Trial Methods, term used for some behavioral methods, e.g. Lovaas Method (see "Behavioral Therapy" )
DSS "Department of Social Services"
DTT "Discrete Trial Training" (Note: I've also seen it referred to as "Discrete Trial Therapy" and "Discrete Trial Teaching") I've seen the term applied to Lovaas's ABA-based method for treating children with autism, and I've seen it used as a term for the "drilling" aspect of ABA. The term is also often used in a less specific way, as a synonym for ABA.
DMAE "dimethyl aminoethanol"
DMG "dimethylglycine"
DSM-III, DSM-III-R, & DSM-IV "Diagnostic and Statistical Manual"
DVD "Developmental Verbal Dyspraxia"
Dyspraxia Term for a neurological symptom: a problem with "praxis", i.e. planning, initiating, sequencing, and carrying out volitional movements. I think "dyspraxia" and "apraxia" mean the same thing, having been coined in different professional circles.
E-2 or E2 Bernard Rimland's check list from the Autism Research Institute. It functions as an autism rating device, and is basically being used to gather data for study.
EAHCA "The Education for All Handicapped Children Act See "Public Law 94-142".
Echolalia Repeating back something said to you. Delayed Echolalia is repeating it later. Both behaviors are found in many people with autism. Functional echolalia is using a quoted phrase in a way that has shared meaning, for example, a child who sings the Barney jingle to ask for a Barney videotape, or says "Get your shoes and socks" to ask to go outside.
EEG "Electroencephalogram" A test consisting of recording brainwaves as picked up by electrodes. It is used to identify seizures. It is also used to differentiate LKS from other disorders in with autistic symptoms.
ELAP "Early Learning Accomplishment Profile"
evaluation checklist for children used by some professionals
EFA "Essential Fatty Acid"
ESY "Extended School Year" in Public Education for special education students
FAPE "Free and Appropriate Education"
FAPE "Free and Appropriate Education"
FC or F/C "Facilitated Communication"
FCT "Facilitated Communication Training" A variant of the term "Facilitated Communication"
FEAT "Families for Early Autism Treatment"
GARS "Gilliam Autism Rating Scale"
GF or g/f "gluten free" a diet.
GFCF gluten-free and cassein-free
HFA "High-functioning Autism"
Hyperlexyia Ability to read at an early age, but often without linking the words to what they words mean.
Hypotonia Low muscle tone.
ICD-10 International Classification of Diseases 10th Edition
ICF "Intermediate Care Facility"
IDEA "Individuals with Disabilities Act"
A US Law mandating the "Free and Public Education" a.k.a. FAPE of all persons with disabilities between the ages of 3 and 21.
IEP "Individualized Educational Plan"
IFSP "Individualized Family Service Plan"
IHP "Individualized Habilitation Program"
IgG An antibody involved in intraveneous immunoglobulin
IGIV or IgIV "intravenous immunoglobulin"
IVIG Same as IGIV.
IVIgG "intravenous gamma globulin"
Inclusion (or "Mainstreaming") Placement of a disabled child with non-disabled peers in a regular classroom.
IPP "Individual Program Plan"
JRC "Judge Rotenberg Center" a facility in Providence RI run by Matthew Israel, a follower of B.F. Skinner. Extremely controversial due to its use of aversives (electro shock device, ammonia water sprays in face etc.) for self injurious behaviors and noncompliance. The state of Massachusetts has been unable to close it, despite the death of a resident during the administration of a punishment. It was profiled in a television documentary on Connie Chung's _Eye to Eye_ which included footage taken by a hidden camera of various punishments being administered to residents. The JRC was formerly called the Behavioral Research Institute (BRI).
LCSW "Licensed Clinical Social Worker"
LD "Learning Disabled"
LFA "Low-functioning Autism"
LRE "Least Restrictive Environment"
LSH "Language, Speech and Hearing Specialist"
MR "Mentally Retarded" or "Mental Retardation"
MRI "Magnetic Resonance Imaging" A diagnostic tool in the sense of an X-ray machine or Cat scanner, which like them, creates internal images of the selected parts of the body. Rather than sending X-rays through the body, it builds its image data by testing the magnetism of the body tissue.
MSDD "MultiSystem Developmental Disorder"
Stanley Greenspan's term for an autistic-like set of symptoms.
NAS "National Autism Society"
Neuroleptic A class of drug that includes Haldol and Risperdal
NICHCY "National Information Center for Children and Youth with Disabilities"
NIH "National Institutes of Health" U.S. government agency.
NLP "Natural Language Paradigm" Note: NLP is also the acronym for something else: "Neuro-Linguistic Programming", and partly for this reason, "Natural Language Paradigm" has been renamed "Pivotal Response Training".
NIMH "National Institutes for Mental Health"
NT "Neurologically Typical" or for short, "Neuro-typical" or "Neurotypical"
this term is used in discussions of people with autism to refer to people who are not autistic.
NOS "Not Otherwise Specified" (see "PDD-NOS")
NPA “Non-Public Agency” referring to an agency or service provider of therapies outside of the public school
OCD "Obsessive Compulsive Disorder"
OCR "Office of Civil Rights"
Ocytocin a neurotransmitter.
ODD "Oppositional Defiant Disorder"
OT "Occupational Therapy" or "Occupational Therapist" Like Physical Therapy only deals with fine motor skills, e.g. picking up small objects like coins. Occupational therapists would be the people who provide Sensory Integration Therapy
PANDAS "Pediatric Autoimmune Disorders Associated with Strep"
PDD "Pervasive Development Disorder"
PDD-NOS or PDD/NOS "Pervasive Development Disorder--Not Otherwise Specified"
PECS "Picture Exchange Communication System" a method of exchanged a set group of pictures for use as communication
PEP "psycho-educational profile" (see "PEP-R")
PEP-R "psycho-educational profile-revised" a test designed (among other things?) to assess the presence of autism and point toward treatment strategies and some areas of need.
Perserveration obsessive-like continued immediate repetition of a behavior.
Pica ingestion of nonfood items.
PET a type of brain scan, similar to an MRI, imaging the brain in activity
Proprioceptive A sense, as it relates to Sensory Integration. Having to do with the sense of the position of parts of the body, relative to other neighbouring parts of the body and in space; the knowledge of position, weight, and resistance of objects in relation to the body; The awareness of posture, movement and changes; ones sense of body position; I always just think of a ballet-dancer, they have perfect body awareness of where each muscle is in relation to other body parts and in space.
PRT "Pivotal Response Training," a part of ABA (see above)
PT "Physical Therapy"
Public Law 94-142 Also known as The Education for All Handicapped Children Act of 1975 (EAHCA). USA Federal law providing funds to states that maintain certain standards in their education of handicapped children, i.e. providing a free and appropriate education in a least restrictive environment. I believe IDEA is the more recent version of this law.
Purkinje cells A type of cell in the brain. There is a theory that a lack of Purkinje cells is related to autism. This idea came from reports of autopsies on people with autism.
Refrigerator-Mother Slang jargon phrase used in the 50’s and 60’s to describe mothers of autistic children who act coldly. The phrase was used in descriptions of the Freudian psychological theory of the cause of (infantile) autism. Considered antiquated.
Residual state autism (actually, "infantile autism residual state") A DSM-III (1980) category for individuals who once met the criteria for autism but no longer do so but may retain some residual traits. DSM-IV (1987) dropped the category.
Sensorimotor Pertaining to brain activity other than automatic functions (respiration, circulation, sleep) or cognition. Sensorimotor activity includes voluntary movement and senses like sight touch and hearing.
Seratonin A neurotransmitter, i.e. brain chemical that plays a part in communication within the nervous system. It has been noted that the level of seratonin measured in people with autism is sometimes higher than that in typical people. Some of the drugs that have been tested for use with people have been drugs already known to affect seratonin.
SI "Sensory Integration" SI also sometimes stands for "Speech Impairment".
SIB "Self-Injurious Behavior"
SIT "Sensory Integration Therapy"
SLP or S-LP "Speech-Language Pathologist"
SRLDP The School Readiness Language Development Program (SRLDP) in LAUSD is an oral language program intended to prepare typically-developing students for kindergarten
SRRI "selective serotonin reuptake inhibitor"
SSI-DC "Supplimental Security Income-Disabled Child" US program.
SSS "Scotopic Sensitivity Syndrome"
Stim (e.g. stimming) short for "self-stimulation", a term for behaviors whose sole purpose appears to be to stimulate ones own senses. An example is rocking ones body. Many people with autism report that some 'self stims' may serve a regulatory function for them (ie. calming, adding concentration, shutting out an overwhelming sound). Other examples: hand-flapping, toe-walking, spinning, echolalia.
TEACCH "Treatment and Education of Autistic and Related Communication Handicapped Children"
TS "Tourette Syndrome" The initials "TS" have also been used for another condition, "Tuberous Sclerosis"
Vestibular A sense, as it relates to Sensory Integration. Having to do with the body's system for maintaining equilibrium; I always just think “balance.”
The Welch Method (Welsh Method; or "Holding Therapy")
For other glossaries, see
http://strider.syr.edu/rjkopp/autism/abbreviations.html, http://www.autism-resources.com/autismfaq-glos.html
Some Fun Info
These are some of the celebrities who have loaned their name for use in support of autism funding though they do not have any relatives with autism. (Source: http://www.autism-resources.com)
Troy Aikman
Jon Bon Jovi
Anthony Edwards
Tommy Hilfiger
Dustin Hoffman
Anne Rice
Both Anthony Edwards and Dustin Hoffman have dedicated continuing effort to the cause.
Well-known people who have chosen to write or speak about their family members with autism (Source: http://www.autism-resources.com):
Richard Burton (deceased actor) about his daughter by his first wife.
William Christopher (Father Mulcahy on the TV show M*A*S*H) about his son, Ned.
Will Clark (Baseball player) about his son.
Paul Collins (writer) about his son.
Myron Cope (Pittsburgh sportscaster) about his son.
Tom Henke (Toronto baseball pitcher) about his son.
Carl Erskine (former baseball player).
Audrey Flack (scuptor, photographer), mother of an adult with autism.
Doug Flutie (football player) about his son, Doug Jr.
Stephen J. Gould (scientist/writer) about his son, Jesse.
Merton Hanks (football player) about his daughter, Milan.
Scott Mellanby (hockey player) about his son.
Joe Mantegna (actor), father of daughter with autism.
Dan Marino (football player) about his son.
Jenny McCarthy (actress), about her son, Evan.
Wynton and Brandford Marsalis (jazz/classical musicians) about their brother.
Mark McEwen (TV weatherman on CBS Morning News), about his brother, Sean.
Barbara Roberts (former Governor of Oregon), mother of adult with autism.
Tracy Rowlett (Dallas anchorperson) about his son.
Jonathan Shestak (movie producer) about his son, Dov.
Beverly Sills (opera singer) about her son, Bucky.
Phoebe Snow (singer), mother of daughter with autism.
Sylvester Stallone (movie actor) about his son, Seargeoh.
BJ Surhoff (Baltimore baseball player, 1996) about his son, Mason.
David Tomlinson (the actor who starred in Mary Poppins, Bedknobs and Broomsticks, the Love Bug etc) had an son with autism, whose diagnosis and education is mentioned in some detail in Mr. Tomlinson's autobiography Luckier than Most.
Individuals with autism who have become well-known through their writing and/or speaking on their experiences (Source: http://www.autism-resources.com):
Donna Williams
Temple Grandin (http://www.grandin.com/)
Thomas McKean
Occasionally there is speculation as to whether some particular well-known person had autism, e.g. an author, scientist, or mathematician known to be unsocial and very focused. For example, there is an audiotape called Was Einstein Autistic? (One hour tape that focuses on the research conducted over several years by Illana Katz and Dr. Edward R. Ritvo, Professor of Medicine at UCLA. http://reallifestories.com/public/ein.html) However, despite such speculation, these people in general could socialize in advanced ways: eye contact, etc. One of the most convincing cases of a famous person being having autism was Canadian pro golfer Moe Norman. There is a biography of him: The Feeling of Greatness, the Moe Norman Story by Tim O'Connor.
I hope this all helps and clears a few things up. If you like, please feel free to send this to a friend or print it and give it to someone you care about.
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