(workshop 008)
Presented by 
Margo Allen, Early Intervention Services
Darlene Spence, York Behavior Management Services
Liz C., Parent and BBB Autism Support Network Founder  

February 5, 2002

This was a two-part presentation.

PART ONE "A BEGINNER'S GUIDE TO AUTISM" presented by Margo Allen and Darlene Spence
(access part two here)

It is perfectly natural  to be feeling all of these emotions at once time or another during your journey.

Why am I feeling such a sense of loss?

Parents experience the death of the idealized child.
Most people experience similar stages of grief to when a loved one dies.
The impairment in the child’s ability to show affection makes coping with the diagnosis of autism
particularly difficult.
The ability to cope is strengthened when parents see the positive effects of treatment.
Families should get help if the grief and adjustment reactions become prolonged or immobilizing.
What is PDD/ASD?
PDD is an acronym for Pervasive Developmental Disorder.
PDD and ASD (Autism Spectrum Disorder) are the same thing. They are the umbrella under which other disorders fall: Autism, PDD-NOS (not otherwise specified), Asperger’s, Rett’s, and Childhood Disintegrative Disorder.
It is a life long disability which usually appears in the first 30 months of life.
PDD/ASD is characterized by impairments in communication, social interactions, behaviours and activities/interests.
It is believed that the child is born with, or born with the potential for developing PDD/ASD.

How is PDD-NOS, Autism and Asperger's Syndrome Diagnosed?

To assist in diagnosis, doctors use the criteria outlined in the DSM IV
Some doctors use other standardized tests (ie. CARS: Childhood Autism Rating Scale) to assist with the the following: assessment; determining the severity of autism; and for determining eligibility for services (ie Provincial Autism Initiative – IBI program).

Will My Child Have Difficulty Learning?

A developmental assessment will give you an idea of your child’s potential learning difficulties and areas of strength.
About 80% of the children with autism have an IQ below average (with most in the mild to moderate range of severity).
About 50% of children with PDD-NOS have an IQ below average.
Of the 20% with autism that have an average or above average IQ, 2/3 have normal levels of nonverbal abilities but have significant impairments in verbal abilities (language).
This information is based on old statistics.  Early intervention will most likely alter these figures resulting in a more positive outcome for many children.

How Common is ASD/PDD?

PDD (Autism & PDDnos) occurs in about 1 of every 500 children (Bryson, 1997).
Boys are affected 4 to 5 times more often than girls.
Autism Spectrum Disorders are more common than cancer, diabetes, spina bifida and Down syndrome (Filipek, Accardo, Baranek et al, 1999).

What Causes PDD/ASD?

We don’t know what causes PDD/ASD. 
PDD/ASD are not the result of any parenting approach.
There are many theories but none have been conclusively proven.  Scientifically supported findings and theories include:
nFamily Heritability:  there is a 50 to 100 fold increase in the rate of autism among siblings (Simonoff, 1998); 60% of identical twins have Autism, 71% have broader Autistic spectrum disorder and 92% show an even broader clinical presentation (Baily et al, 1998).
nAssociated Medical or Genetic Conditions: autistic symptoms appear in some other medical disorders (New York State Department of Health, 1999).
nNeurocutaneous disorders (ie. tuberous sclerosis);
nMetabolic disorders (ie. phenylketonuria);
nIntrauterine infections (ie. rubella, cytomegalovirus);
nGenetic disorders (ie. Williams syndrome, Fragile X).
nPhysical Characteristics: a larger than average head circumference typically appears in early to middle childhood due to an increased rate of brain growth (Bailey et al., 1998).

Exercise: How my child experiences the world…

Pair up with another parent. Discuss how your child engages in the following:

Emotional expression;
Social interactions;
Sensory responses (reactions to movement or things seen, touched or heard).

What are typical difficulties with nonverbal communication?

Nonverbal communication (gaze, facial expression, sounds and gestures) is limited or absent:

Use hand leading instead of pointing;
Absent or impaired use of anticipatory reach (hands up with eye gaze to signal desire to be picked up);
Smiles and eye gaze may be over stimulating so it is fleeting (usually only when something is wanted) or absent;
Regulate the space between themselves and others differently (keep farther distances, remain in
periphery of a group, keep back turned to others when concentrating, back into adults for hugs, preference
for side to side contact instead of face to face, will circle or pace when wary or apprehensive).

What are typical difficulties with verbal communication?

25 to 45% of children with autism remain nonverbal (never speak or only speak a few words or sounds).
Most language is elicited rather than spontaneous.
Language is instrumental (to provoke an action or obtain an object).
Immediate or delayed echolalia (echoes back what has been heard in an attempt to process the information,
communicate understanding, or as a way of communicating).
Pronoun reversal (confusing "I" and "you").
Those with conversational skills will talk about topics of interest to them with little or no encouragement yet are
cursory in their responses about other topics.
Poor understanding of language pragmatics (how to express what needs to be said, knowing that the listener is
listening and interested, knowing when enough or not enough has been said).

What are typical difficulties with emotional expression?

There is a diminished range of emotional expression.
Emotional reactions tend to go from one extreme to another with few or no emotional expressions in
between (positive excitement and displeasure).
Often look solemn or serious as they pursue their activities (lack smiles to show their accomplishments).
Tone of voice is often flat, high pitched and unmodulated, or sing-song like with the wrong words being accentuated.
It is like learning two languages at the same time (1. Language of content, 2. Language of intonation and cadence,
which expresses the emotional component). We say the same word differently each time thus making it difficult to decode.

What are typical difficulties with emotional interpretation?

Difficulty interpreting the emotional states of others (intensity of the emotion is perceived but fail to notice whether it is positive or negative).
Lack the understanding that others have thoughts and feelings too.
Difficulty understanding emotions make it difficult to link the punishment to the misdeed; so punishment tends to be ineffective and make the child more anxious.

What are typical difficulties with social interactions?

Relates for instrumental purposes (to gain something wanted) and not expressive (to provoke or show emotions).
Social isolation:
Wanders far from parents without concern;
Leaves room when company arrives;
Removes oneself from the centre of the group action.
Limited or absent social play:
Play tends to be concrete rather than representational (imaginary);
Most like movement stimulation (chasing, tickling, jumping, roughhouse play);
Often play near children where few if any play is copied (therefore, it is not parallel play).
Lack peer friendships as other children are not the most interesting things in the room.
Rarely engages in socially reinforcing behaviours (seeking someone to share in your accomplishments).
Tend to compensate by learning social rules; due to lack of flexibility in thinking and reasoning, the rules are sometimes applied to situations where they are no longer appropriate.
Seek physical affection on their terms (when, how long and how they want it), which typically lacks eye gazing and talking/sounds.
Atypical patterns of comfort seeking:
Calming faster when left alone to cry;
Seeking isolation when afraid;
No glances at others while crying/screaming to see what effect they are having on others.
Difficulties in developing imitation (the more social it is, the harder it is to imitate because it may be difficult to pay attention to the human model).

What are typical difficulties with play and imagination?

Interest in toys may be absent, limited or short in duration.
Attachment to unusual objects due to enjoyment of the evoked sensation (i.e. Play with the empty bottle of fabric softener because of the smell).
Remain at the sensory stage longer.
Perseveration in certain activities that are difficult to interrupt (ie. Pulling the cord on the See & Say, lining up objects).
Preoccupation with parts of the object and not seeing the object as a whole (i.e. Spinning the wheels on a toy car).
Play lacks imagination (play shows the function but they do not add their own thoughts, feelings or interpretations).
Need for sameness, insistence on routines and resistance to change (routine is reassuring and predictable).

Can unusual activities or interests be useful?

Sometimes the perseveration of interests leads to adaptive behaviour (i.e. Teach themselves to read and count by lining up letters and numbers).
Our challenge is to transform the "special interest" into a functional, useful activity or learning strategy (i.e. The keen interest in nuts and bolts led to a job at a hardware store).

What difficulties occur with the senses?

Reactions to things seen, touched, heard or movement can either be too much or too little:
Auditory hypersensitivity results in tantrums or the covering of ears when certain sounds are heard;
Auditory hyposensitivity seems like selective hearing and there is often concern of hearing loss;
Visual detail scrutiny occurs when a specific object or group of objects, are chosen to be visually inspected repeatedly (i.e. Wiggling string);
Tactile detail scrutiny occurs when there is a fixation on the tactile qualities of an object (ie. The smooth silk on the blanket);
Taste sensory stimulation occurs when things are put in the mouth but not eaten (ie. Gravel, twigs, leaves);
Smell fixations occur when objects are smelled as a way of exploring it;
Movement over reactivity occurs when there is a strong like or dislike to experiencing movement (ie. Swinging, jumping).

What is the function of "self-stimulatory" behaviours?

These can include: flapping of hands or arms; toe walking; tensing; rocking; head-banging; and other patterns of repetitive movements.
The function of these behaviours could be:
Reaction to difficulties in properly regulating the perceived intensity of sensory stimulation (they feel overwhelmed);
Method of self regulating the level of pleasurable auditory, visual or motor stimulation by shutting down access to other forms of stimulation (therefore, it can be difficult to gain their attention at this time).

Why engage in self-injurious behaviours?

Self-injurious behaviours (SIBs: head banging; hand biting; excessive scratching) are rare (less than 5%) and treatable with behavioural intervention.
SIBs may be the result of medical problems (i.e. Ear infections, migraines, seizures, etc.), side effects of medications, frustration, the inability to communicate or the inability to perceive pain (like pinching your lip after freezing from the dentist).

What are some of the strengths and needs of your children?

There is little or no internal need to please others so external desirable motivators (activities, food) are often needed to encourage skill development or different behaviours.
They do what they do because it makes sense to them; there is no deliberate malicious intent.
Irrational fears or no fear of real danger.
Problems with toileting, sleeping and/or eating.
May seem to be unaware of pain, heat or cold.
Information presented orally can be difficult to process.
May have high visual processing abilities with excellent memories.
May have a selective diet due to sensory issues (ie. textures, hardness, smells).
May avoid activities, become distracted or act out due to sensory over stimulation.
Have straightforward and honest personalities.
Have stronger skills in expressive language (talking) than receptive language (comprehension), which fools us into thinking they understand more than they do.
Pay too much attention to irrelevant stimulation so we are not always certain what information was received in the exchange.
Have difficulties learning about contingencies (when I do X, Y happens).
Have difficulties generalizing learned skills.
Have difficulties following directions.
Spend unstructured or free time engaging in unproductive activities.
Engage in disruptive behaviours due to frustration, boredom, lack of appropriate skills or misinterpretation (someone's friendly gesture is seen as intrusive).
Preference for routines as it makes the world more predictable.
Friends are seen as very important.

What is the prognosis?

PDD/ASD are life long disorders.
New skills and behaviours can be learned to help a person compensate for their deficits.
Developmental assessments may be helpful in determining the strengths and needs in each developmental area. This information assists in determining teaching strategies and appropriate goals.

How important is early intervention?

The earlier the intervention the better, as most brain growth occurs in the first 5 to 6 years of life.
Specific stimulation at a young age can allow for new "storehouses" and "pathways" to be built and firmly established.
With training, the brain has the capacity to allow information or sensory ability to come from an area in the brain not usually used for that purpose (re-routing the non-working parts of the brain).
Decreases the chance of developing maladaptive behaviours (i.e. tantrums due to frustration when not able to effectively communicate).
A scientifically proven successful method is the “Intensive Early Intervention Program”  started by Dr. Ivar Lovaas at UCLA.  These children received 40 hours per week of one-to-one behavioural intervention.  They used pre-academic concepts as a way of improving:
nReceptive and expressive skills;
nIntegration with peers.
Applied Behavioural Analysis is referred to as ABA.
Intensive Behavioural Intervention is referred to as IBI and it is used by the Provincial Autism Initiative.
Other helpful interventions include: social interaction with other children, sensory integration therapy, behavioural intervention for specific problem areas, speech and language therapy, play therapy, music therapy…


Note: BBB Autism is not responsible for information found on links or in books listed here.

6: August 11, 2002