Forum: Children with Developmental Delays and Disorders
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What does it all mean, what do I do if I suspect Autism, what is this thing my child is doing, where do I go for help?
If you suspect an ASD or are the parent of a newly diagnosed child, you probably have a lot of questions. I hope you can find some answers here, or some help in the right direction.
Scroll through this thread for information about Autism and Autism Spectrum Disorders, the Red Flags & What to do if you suspect an ASD, Common Terms & Abbreviations, Info about Stimming, Links to books about and for children with Autism Spectrum Disorders and their families, and more.
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Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.
Crissy ♥ mama to Jack 7.16.01 ~ Mia Bella 10.29.02
Angus Pickle 2.24.04 ~ Sydney Bean 10.26.06 & Kater Tot 2.15.09
Ask your doctor for an autism evaluation if your child:
Does not babble or coo by 12 months of age
Does not gesture (point, wave, grasp, etc.) by 12 months of age
Does not say single words by 16 months of age
Does not say two-word phrases on his/her own (rather than just repeating what someone says to him/her) by 24 months of age
Has any loss of any language or social skill at any age.
Other "red flags" parents, teachers, and caregovers should be on the lookout for are:
The child does not respond to his/her name.
The child cannot explain what he/she wants.
Language skills or speech are delayed.
The child doesn’t follow directions.
At times, the child seems to be deaf.
The child seems to hear sometimes, but not others.
The child doesn’t point or wave bye-bye.
The child used to say a few words or babble, but now he/she doesn’t.
The child throws intense or violent tantrums.
The child has odd movement patterns.
The child is hyperactive, uncooperative, or oppositional.
The child doesn’t know how to play with toys.
The child doesn’t smile when smiled at.
The child has poor eye contact.
The child gets “stuck” on things over and over and can’t move on to other things.
The child seems to prefer to play alone.
The child gets things for him/herself only.
The child is very independent for his/her age.
The child does things “early” compared to other children.
The child seems to be in his/her “own world.”
The child seems to tune people out.
The child is not interested in other children.
The child walks on his/her toes.
The child shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants).
Child spends a lot of time lining things up or putting things in a certain order.
These signs don't necessarily point to an autism spectrum disorder, but they can be helpful in determining if a child should be evaluated for an ASD or other communication disorder.
My child has signs of autism, now what?
See your child's primary care provider as soon as possible. Make a list of all the red flag symptoms your child exhibits, and anything else about your child that concerns you. If your doctor agrees that your child has definite signs of autism, or enough red flags to be concerned, they should refer your child to a specialist in child development or another type of health care professional for further testing and evaluation.
Is my child old enough to diagnose?
Most symptoms of autism are measurable around 18 months, but a child may show symptoms before then. Parents and experts in autism will be able to see these signs where others may not. That's why if you suspect your child has an ASD, bring up your suspicions to your child's primary care provider and push for that evaluation, you as the parent see more than your doctor may observe in a short well-baby visit. In general, a diagnosis of autism is made between age 2 and 3, when there has been a noticeable delay in developing communication skills.
What kind of services can my child get?
The Individuals with Disabilities Education Improvement Act of 2004 requires the child’s primary health care provider to refer the family to an Early Intervention service. There is no cost to the family. In addition, children aged 3 and up are entitled by law to Free and Appropriate Public Education.
Specific services vary by state, but include special education and related services or treatment programs. These programs can include special needs preschool, individual speech and occupational therapy, in-home therapy and transportation to services if needed.
If your child is under 3 years old, contact your local Zero-to-Three (or Birth-to-Three) service system, if your child is over 3, contact your local School District for services. Early Head Start, your local School District, state education agency, and the local or state Health Departments can provide you with referrals for the necessary services.
Last edited by picklesmama; September 10th, 2009 at 11:52 PM.
Reason: added info
Abbreviations and Terms you might encounter on this board.
ABA - Applied Behaviour Analysis - A style of teaching which uses a series of trials to shape a desired behaviour or response. Skills are broken down into their simplest components and then taught to the child through repeated trials. Positive reinforcement is used to reward correct responses and behaviors, and incorrect responses are ignored. ABC - Autism Behaviour Checklist - A diagnostic device for autism. A checklist containing a list of behaviours and weighted scores which appear to be capable of measuring the level of autistic behaviours in individuals. ADHD - Attention Deficit Hyperactivity Disorder - A particular symptom complex with core symptoms including developmentally inappropriate degrees of attention, cognitive disorganization, distractibility, impulsivity and hyperactivity, all of which vary in different situations and at different times. Common secondary symptoms include perceptual and emotional immaturity, poor social skills, disruptive behaviours and academic problems. ADI-R - Autism Diagnostic Interview-Revised - A fairly technical diagnostic scale for autism developed by the Medical Research Council in London, England. It is a standardized, semi-structured parent interview that can be used to assess children and adults with a mental age of 18 months and up. ADOS - Autism Diagnostic Observation Scale - A standardized, semi-structured play session that allows the examiner to observe communicative and social behaviours that are associated with autism. It requires 20-30 minutes to administer. APE - Adaptive Physical Education - is an individual program of developmental activities, games, sports, and rhythms suited to the interests, capacities, and limitations of students with disabilities who may not safely or successfully engage in unrestricted participation in the vigorous activities of the general physical education program. AS - Asperger's Syndrome - A developmental disorder on the autism spectrum defined by impairments in communication and social development and by repetitive interests and behaviours. Unlike typical autism, individuals with Asperger's Syndrome have no significant delay in language and cognitive development. ASD - Autism Spectrum Disorder - A term that encompasses autism and similar disorders. More specifically, the following five disorders listed in the DSM-IV: Autistic Disorder, Asperger's Disorder, Pervasive Developmental Disorder - Not Otherwise Specified, Childhood Disintegrative Disorder, and Retts Disorder. ASL - American Sign Language - A system of gestures, hand signals and finger spelling used in North America and other English-speaking locales. Assistive Technology - Any item or piece of equipment that is used to maintain, increase or improve the functional capabilities of individuals with disabilities. Atypical Autism - A general term for conditions that are close to but do not quite fit the set of conditions for autism or other specific conditions. Augmentative or Alternative Communication - The use of aids to help an autistic child communicate his/her wants and needs. For example, photographs and picture exchange communication. Autism - Autism is a neurologically based developmental disorder that affects several areas of functioning including: social interactions, communication, abstract thought processing, and executive functioning. As the name implies, these disorders reside on a spectrum with many levels of severity. Individuals with autism spectrum disorders (ASD) present with a wide range of strengths and weaknesses. Autism is one of just five Pervasive Developmental Disorders (PDD) defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR). PDDs are characterized by significant impairments in social interaction and communication. Individuals with autism may have difficulty in responding to change or transition. They may exhibit over- or under-sensitivity to pain or other sensory stimulation. Autism often results in deficits in imaginative play and abstract thought. Parents report that the child with autism does not want to be cuddled and that he or she avoids eye contact or demonstrates unusually intense eye contact. Children with autism often become preoccupied with parts of toys (the wheels of a truck), but rarely play with toys in the traditional manner. Left untreated, the communication and sensory problems associated with autism may result in tantruming or aggressive behaviors. In the past, autism was defined as a rare disorder, but current estimates indicate that close to one in 150 children have an autism spectrum disorder. Recent years have seen a dramatic increase in the diagnosis of autism spectrum disorder. It is thought that at least some of this increase is due to heightened awareness and improved diagnostics. The cause of autism spectrum disorders is not known; however, there is evidence to suggest that there is a genetic component. Early identification and early intervention can help children with ASD reach their own unique potential. Autistic Savant – an autistic individual who has an extraordinary aptitude in a specific area; mathematics, art, and music are common gifts among autistic savants Aversives - Behavioural methods employing punishment rather than positive reinforcement.
BSID - Bayley Scales of Infant Development - A developmental assessment used to measure the mental and motor development and test the behavior of infants from one to 42 months of age. The test is intended to measure a child's level of development in three domains: cognitive, motor, and behavioral. The scale has a mean of 100 and a standard deviation of 15.
CARS - Childhood Autism Rating Scale - A test designed to help differentiate children with autism from those with other developmental delays. The child is rated from 1 to 4 on each item, ranging from normal to severe and yielding a final score indicating non autistic, mild to moderately autistic, or severely autistic. Communications Notebook - A notebook sent with a student (typically a young or special education student) to and from school by which parents and teachers maintain daily communication.
DAN! - Defeat Autism Now! - Defeat Autism Now! is a network of physicians, researchers and scientists who first came together in 1995 under the auspices of the Autism Research Institute to share information and ideas towards the goal of defeating autism as quickly as possible through educating parents and clinicians about biomedically-based research and treatment options in autism spectrum disorders. DD - Developmental Disabilities - A developmental disability is one that is attributed to mental retardation, autism, cerebral palsy, epilepsy or a specific learning disability, or any other closely related condition that originates before the age of twenty-two, has continued or can be expected to continue indefinitely, and constitutes a severe handicap to the individual’s ability to function normally in society. DIR – Developmental, Individual Differences, Relationship-based - A common type of autism therapy. DSM-IV - The Diagnostic and Statistical Manual of Mental Disorders - An American handbook for mental health professionals that lists different categories of mental disorders and the criteria for diagnosing them, according to the publishing organization the American Psychiatric Association. It is used worldwide by clinicians and researchers as well as insurance companies, pharmaceutical companies and policy makers. A "text revision", DSM-IV-TR, was produced in 2000.
Echolalia – Repetition of words or phrases heard previously. The echoing may occur immediately after hearing the word or phrase, or much later. Delayed echolalia can occur days or weeks after hearing the word or phrase. Related: Perseverative Speech. EEG - Electroencephalogram, a test that uses electrodes placed on the scalp to record electrical brain activity. It is often used to diagnose seizure disorders or to look for abnormal brain wave patterns. EI or ECI - Early Intervention, or Early Childhood Intervention - A state-funded program that is designed to identify and treat developmental problems or other disabilities as early as possible. Sometimes called Birth to 3 because eligibility begins at birth and ends at 36 months. Appropriate EI services must be tailored to meet the unique needs of the eligible infant or toddler and his or her family. These services must be designed in collaboration with the family to enhance both the development of the child and the family’s capacity to meet the needs of the child.
Fragile X Syndrome - A genetic disorder that shares many of the characteristics of autism. Free Appropriate Public Education - FAPE - Education must be provided to all children ages three to twenty-one at public expense.
GCFC - gluten-free casein-free - A controversial diet that eliminates intake of the naturally-occurring proteins gluten (found naturally in wheat, barley, and rye) and casein (found in milk). The Autism Research Institute and other advocacy groups recommend the diet as a treatment for autism and related disorders. Studies supporting these claims have had significant flaws, so the data are inadequate to guide treatment recommendations. A long term double-blind clinical trial sponsored by the National Institute of Mental Health was scheduled for completion April 2008; results are not yet available.
High Functioning Autism - Individuals with autism who are not cognitively impaired are called 'high functioning'. Hyperlexia - The ability to read at an early age. To be hyperlexic, a child does not need to understand what he or she is reading. Hypotonia - Low muscle tone.
IEP - Individualized Educational Plan - A written document that is developed by a team that includes the professionals involved in the child’s education and the parents. An IEP identifies the student's specific learning expectations and outlines how the school will address these expectations through appropriate special education programs and services. It also identifies the methods by which the student's progress will be reviewed. For students 14 years or older, it must also contain a plan for the transition to postsecondary education, or the workplace, or to help the student live as independently as possible in the community. The IEP must be reviewed at least annually, and can be updated sooner if the child’s needs change. IFSP - Individualized Family Service Plan - A written document developed by a multidisciplinary team that includes the family as a primary participant. Every child and family is assigned to a service coordinator who is responsible for helping them navigate the EI Services System and who coordinates eligibility determination and service plan development. The IFSP describes the child’s developmental levels in all areas; the family’s resources, priorities, and concerns relating to enhancing the development of their child; and the services to be received, including the frequency, intensity, and method of delivering services. In addition, the IFSP must contain a statement of the natural environments in which early intervention services will occur. Projected dates for service initiation and duration must be given. The IFSP must be reviewed at least every six months and updated following annual assessments. It can be updated sooner if the child’s needs change.
Least Restrictive Environment - The setting that least restricts opportunities for a child with disabilities to be with their peers without disabilities. The law mandates that every child with a disability be educated in a Least Restrictive Environment.
Macrocephaly - The term used to describe the condition of having a head circumference two standard deviations above average, which translates to a clinical definition of greater than the 97th percentile. Mainstreaming - Placement of a disabled child with non-disabled peers in a regular classroom. M-CHAT - Modified Checklist for Autism in Toddlers. A screening questionnaire for early detection of autism in children under 3. Meltdown - Tantrum-like episodes that differ from a typical temper tantrum in their intensity, duration, and level of destructiveness. Once started, they are often difficult to interrupt. Microcephaly - The term used to describe the condition of having a head circumference two standard deviations below average, producing an abnormally small head, and a congenitally small brain. MRI - Magnetic Resonance Imaging, a diagnostic technique that uses the magnetic qualities of body chemicals to produce an image of the brain.
Neurodiversity – The idea that autism is not a disease but instead a different way of being human. Neurologist - A doctor specializing in medical problems associated with the nervous system, specifically the brain and spinal cord. Neurotypical – Someone who is not on the autism spectrum; a term more commonly used by autistic individuals
OCD - Obsessive-Compulsive Disorder - An anxiety disorder in which a person experiences recurrent unwanted thoughts and performs ritualized, seemingly purposeless acts. OT - Occupational Therapist - Individual who specializes in the analysis of purposeful activity and tasks to minimize the impact of disability on independence in daily living. The therapist then helps the family to better cope with the disorder, by adapting the environment and teaching sub-skills of the missing developmental components. Also... OT - Occupational Therapy - Therapy provided by an occupational therapist that assists in the individual’s development of fine motor skills that aid in daily living. It also can focus on sensory issues, coordination of movement, balance, and on self-help skills such as dressing, eating with a fork and spoon, grooming, etc. It can also address issues pertaining to visual perception and hand-eye coordination.
PDD-NOS – Pervasive Developmental Disorder Not Otherwise Specified; one of the five types of autism. PECS – Picture Exchange Communication System - A communication system that uses picture symbols. It is taught in six phases starting with a simple exchange of a picture symbol for a desired item. Individuals learn to use picture symbols to construct complete sentences, initiate communication, and answer direct questions. Perseveration - Repetition or abnormal prolongation of an activity, action or response. Perseverative speech or incessant question asking - Perseverative speech and incessant question asking are persistent repetitions of speech or questions which can be used both communicatively or non-communicatively. An individual may ask the same question repeatedly even after they have received a response, or they may repeat the same statement or question to themself without needing a response. Related: Echolalia PT - Physical Therapy - A treatment of physical disabilities given by a trained physical therapist that includes the use of massage, exercise, etc., to remediate mobility and gait and to modify strength, balance, tone, and posture and help the person improve the use of bones, muscles, joints, and nerves.
Respite Care - Respite is temporary, short-term care provided to individuals with disabilities. Services can be delivered in the individual’s home for a few hours or in an alternate licensed setting for an extended period of time. Respite care allows caregivers to take a break in order to relieve and prevent stress and fatigue.
Sensory Issues - Those having difficulty with sensory information are often described as having "sensory issues". See SPD below. Sensory-defensive – An individual who is over-sensitive to sensory input Sensory-seeking – An individual who craves and seeks out a variety of sensory sensation. SI - Sensory Integration Therapy - Therapy designed for individuals with sensory integration deficits; this can include one or more of the senses. The goal is to improve an individual’s ability to use incoming sensory information appropriately and encourage tolerance of a variety of sensory inputs. SLP - Speech-Language Pathologist - Individual who specializes in the area of human communication, a speech therapist with at least a master’s degree and nationally certified and licensed. They focus in on communication, not just speech, to increase the child's ability to impact and to understand their environment. SPD or SID - Sensory Processing Disorder / Sensory Integration Disorder or Dysfunction - Sensory Processing Disorder is a complex disorder of the brain that affects developing children. These children misinterpret everyday sensory information, such as touch, sound, and movement. Some feel bombarded by sensory information; others seek out intense sensory experiences or have other problems. This can lead to behavioral problems, difficulties with coordination, and other issues. Children with SPD are often misunderstood and labeled as aggressive or clumsy. They often are socially isolated and have trouble in school. Effective treatment is available, but far too many children with SPD are misdiagnosed and not properly treated. ST or SLT – Speech Therapy / Speech/Language Therapy - Therapy provided by a speech therapist or speech and language pathologist with the goal of improving an individual’s ability to communicate. This includes verbal and nonverbal communication. The treatment is specific to the individual’s need. Stim - Stim, stims or stimming is short for "self stimulation", a term for behaviours whose sole purpose appears to be to stimulate ones senses. Many people do it (tapping feet, cracking knuckles, twiddling thumbs), but in autistic people these behaviors are more pronounced and may seem downright strange. Autistic people often engage in stimming when they are stressed, to self regulate and sometimes to express emotion. Many people with autism report that some 'self-stims' may serve a regulatory function for them (ie. calming, increasing concentration, or shutting out an overwhelming sound). Common autistic stims are: rocking back and forth, head banging, finger flicking/rippling, spinning, humming, repeating words or sounds and complex body contortions. See the Stim List in the next post for more observed 'stims'.
T.E.A.C.C.H. - Treatment and Education of Autistic and related Communication-handicapped CHildren - A therapeutic approach broadly based on the idea that individuals with autism more effectively use and understand visual cues. It focuses on promotingindependence by using items such as picture schedules to break down tasks step-by-step. This enables an individual to better comprehend and perform the task independently. This approach often aids receptive communication and sequential memory. Tourette's Syndrome - A disorder in which both multiple motor and one or more vocal tics are present with tics occurring many times a day, nearly daily, over a period of more than one year. The onset is before age 18 and the disturbance is not due to direct physiological effects of a substance or a general medical condition. The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning.
Last edited by picklesmama; September 10th, 2009 at 11:56 PM.
Short for "self stimulation", these are terms for behaviours whose sole purpose appears to be to stimulate ones senses. Many people do it (tapping feet, cracking knuckles, twiddling thumbs), but in autistic people these behaviors are more pronounced and may seem downright strange. Autistic people often engage in stimming when they are stressed, to self regulate and sometimes to express emotion. Many people with autism report that some 'self-stims' may serve a regulatory function for them (ie. calming, increasing concentration, or shutting out an overwhelming sound). Common autistic stims are: rocking back and forth, head banging, finger flicking/rippling, spinning, humming, repeating words or sounds and complex body contortions.
Here are some common stims:
lining up toys
repeatedly stacking toys and knocking them down - excessively
spinning wheels on toy cars/trucks
opening/shutting drawers and doors
spinning toys, bowls etc
walking in patterns
dangling strings, pieces of grass, twigs
wiggling fingers - in front of or to the side of face - most often in exactly the same spot
pushing toy trucks and cars while tilting head to watch wheels
watching out the window at cars driving by
staring out window - excessively
watching dust specks in the air
watching ceiling fans
staring at lights
looking sideways and/or upside down at TV
pressing nose to TV
flipping pages without looking at pictures
flipping toys over
running sand/beans etc. through hands while watching
looking at maps pressed close to face
following roads on map with nose
lining up chairs, laundry baskets, boxes and storage containers in a path
rocking - from foot to foot, back and forth while sitting, side to side while sitting
throwing or dropping toys over and over
walking with head to one side
standing on head on furniture
running in circles
rewinding video while watching it rewind
rubbing items together
watching own reflection in doorknobs, toasters, windows at night, oven door, shiny faucets, tv screen when off, clean cars, blank computer screens and mirrrors
holding up small toys (usually characters) in front of TV while video is going
perseverating on Thomas the Tank or other train stuff
turning head in light patterns made by blinds
obsessively pouring a "slinky" from hand to hand
watching a yoyo with peripheral vision over and over
multiple cartwheels frequently and excessively
spinning own body or twirling around
twirling long hair or braids (girls) in peripheral vision
Verbal or Auditory
blurting out loud and/or high pitched noises
repetition of odd noises/sounds
talking to self - excessive and nondirective
echolalia of phrases, movies, songs........
banging on everything
throat sound - compulsive
pounding toys or books
excessive or inappropriate giggling
excessive pretend play
electronic games that repeat
repeating a video scene over and over
telling the same story over and over
reciting alphabet over and over
chewing on insides of cheeks
rubbing clothing between fingers
scratching obsessively/to bleeding
grabbing someone's arm with both hands and squeezing with head against arm
bobbing up and down with top part of body while sitting in chair
sucking on tongue
acting out a movie scene repeatedly
sharpening and sharpening and sharpening pencils
writing numbers or days of the week over and over
Last edited by picklesmama; May 4th, 2009 at 01:56 PM.