AUTISM : too many doubts & querries

WHAT IS AUTISM?

Autism means a developmental disability significantly affecting verbal and nonverbal communication, social interaction and creative or imaginative play, generally evident before age three.

What is ASD?
The autism spectrum disorders (ASD) is a spectrum of psychological conditions characterized by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behavior
The three forms of ASD are:
1. Autism
2. Asperger syndrome
3. Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), sometimes called atypical autism.
Asperger Syndrome has no significant delay in language development. They have good intelligence and are considered as high-functioning autists. PDD-NOS is diagnosed when the criteria are not met for a more specific disorder. Some sources also include Rett syndrome and childhood disintegrative disorder, which share several signs with autism but may have unrelated causes

HISTORY
Autism was first described by Leo Kenner, a psychiatrist at John Hopkins University, in 1943, in a group of children with communication problems.

In 1944, Hans Asperger, an Austrian Pediatrician described a similar condition in children, but with higher cognitive and verbal skills.
Autism first appeared as a separate entitywith specific criteria in Psychiatry texts in 1980.

How common is autism?
Current prevalence of ASD, as reported from the US in 2007 is 6.6/1000
8-year old children. Incidence is reported to be on the rise, as is evident from the graph on annual incidence data.


Is it linked to other diseases?
Autism may or may not exist with other illnesses. A recognizable associated condition in found in only 6% cases. Co-existing Mental Retardation was considered to be 90% before the ‘90s, which has come down to 50% after 2000, due to increased identification of high functioning autism.
Common diseases known to be associated with Autism are Fragile X syndrome(35-50% have autistic traits), Retts syndrome (females with a small head, seizures & autistic traits),Tuberous sclerosis, Phenylketonuria, Fetal Alcohol Syndrome, Angelman Syndrome, Smith Lemli Opitz syndrome etc.
Prenatal factors like ingestion of certain medicines by mother ( valproic acid, thalidomide), maternal illness (rubella) are being considerd as probable causative factors. A population based study by Institute of Medicine in 2001 has established that there is NO causal association between MMR & autism.

WHAT HAPPENS IN AUTISM?
Just after birth, the brains of autistic children tend to grow faster than usual, followed by normal or relatively slower growth in childhood. It is not known whether early overgrowth occurs in all autistic children. It seems to be most prominent in brain areas underlying the development of higher cognitive specialization. Hypotheses for the cellular and molecular bases of pathological early overgrowth include the following:
• An excess of neurons that cause local over-connectivity in key brain regions.
• Disturbed neuronal migration during early gestation.
• Unbalanced excitatory–inhibitory networks.
HOW?
Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.

HOW IS THE PSYCHOLOGY OF AN AUTISTIC CHILD DIFFERENT?
Two major categories of cognitive theories have been proposed about the links between autistic brains and behavior.
The first category focuses on deficits in social cognition. The empathizing–systemizing theory postulates that autistic individuals can systemize, that is, they can develop internal rules of operation to handle events inside the brain ( like arranging things in a specific order)—but are less effective at empathizing by handling events and swquences generated by others. This theory is somewhat related to the earlier theory of mind approach, which hypothesizes that autistic behavior arises from an inability to ascribe mental states to oneself and others. He cannot guess what another person may be thinking or how another person would be looking at a particular situation. The theory of mind hypothesis is supported by autistic children's atypical responses to the Sally–Anne test for reasoning about others' motivations. The second category focuses on nonsocial or general processing. Executive dysfunction hypothesizes that there are deficits in working memory, planning, inhibition, and other forms of executive function . This theory predicts stereotyped behavior and narrow interests.
Weak central coherence theory hypothesizes that a limited ability to see the big picture underlies the central disturbance in autism. He focuses on small things, but cannot take in a situation as a whole. This theory predicts special talents and peaks in performance in autistic people
Neither category is satisfactory on its own; social cognition theories poorly address autism's rigid and repetitive behaviors, while the nonsocial theories have difficulty explaining social impairment and communication difficulties. A combined theory based on multiple deficits may prove to be more useful.

WHAT ARE THE FEATURES OF AUTISM?
The core features of ASD include social skill defects, restricted, repetitive & stereotyped behaviour, and language delay, but there is wide variation in presentation, with a lot of heterogeniety. Social deficits, though specific, may be subtle and go unrecognised. Parental concern is more with the speech delay. Presentations vary and some parents report that their babies are different during the first months of life, whereas delayed speech is reported during the 2nd year of life and still others may be normal in the early months and regress and lose skills in the 2nd year. Some ASD children may present at school age because of poor peer interaction.
Social skill defects include:

 May be content being alone, not seeking connectedness
 Poor eye contact
 Difficulty sharing the emotional state of others
 Joint attention deficit : does not enjoy sharing an object, event or emotion
 Inappropriate peer relationships
 Impaired central coherence: inability to interpret stimuli in a global way.
 Difficulty understanding the perspective of others.
 Difficulty with empathy, sharing and comforting due to severe ToM (theory of mind) deficits…refered to as ‘mindblindedness’

Communication Deficits:
 Mostly present with speech delay
 Lack of desire to communicate
 Lack of non-verbal communication
 Speech maybe scripted and stereotyped.
 Echolalia is common
 Use of pop-up words: spontaneous, inconsistent words uttered out of context
 Use of giant words: phrases uttered as single words (wanna-go-home, give-it-to-me)
 Earlier pre-speech deficits like lack of warm, joyful expression with gaze, lack of recognition of mother’s voice, to & fro communication with mother, disregard for vocalization, delayed babbling etc facilitate early diagnosis.
 Regression : In 25-30% regression of skills occur around 15-24 months, including regression of speech.

Play skills

 Lack of pretend play
 Persistence of sensory-motor and ritualistic play
 Repititive play with lack of creativity & imagination (eg. Spinning wheels of cars)

Behavioural Pattern:

 Peculir mannerisms
 Unusual attachment to objects
 Compulsive behaviour: rigidly follows certain rules like arranging in lines
 Obsessive about sameness: resistant to change
 Ritualistic behaviour: Unvarying pattern of daily activities like unchanging menu, dressing ritual etc.
 Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program, toy, or game
 Repititive & stereotyped movements like rocking, head rolling, flapping hands etc
Other symptoms
 Unusual abilities: 0.5% to 10% of individuals with ASD show unusual abilities, ranging from splinter skills such as the memorization of trivia (rote memory) to the extraordinarily rare talents of prodigious autistic savants. Many individuals with ASD show superior skills in perception and attention, relative to the general population.
 Sensory abnormalities are found in over 90% of those with autism, and are considered core features by some. Differences are greater for under-responsivity (for example, walking into things) than for over-responsivity (for example, distress from loud noises) or for sensation seeking (for example, rhythmic movements. Children with autism are less capable of simultaneously using the different senses to take in the varied information from the environment and combine them to produce a clear understanding of the world around, therefore they may have trouble responding appropriately to different stimuli (is unable to listen to the teacher, when looking at the board).
 An estimated 60%–80% of autistic people have motor signs that include poor muscle tone, poor motor planning, and toe walking; deficits in motor coordination are pervasive across ASD and are greater in autism proper.
 Unusual eating behavior occurs in about three-quarters of children with ASD, to the extent that it was formerly a diagnostic indicator

The Red Flag Signs of Autism Spectrum Disorders:
If your baby shows two or more of these signs, please ask your pediatric healthcare provider for an immediate evaluation.
Impairment in Social Interaction:
• Lack of appropriate eye gaze
• Lack of warm, joyful expressions
• Lack of sharing interest or enjoyment
• Lack of response to name
Impairment in Communication:
• Lack of showing gestures
• Lack of coordination of nonverbal communication
• Unusual prosody (little variation in pitch, odd intonation, irregular rhythm, unusual voice quality)

Repetitive Behaviors & Restricted Interests:
• Repetitive movements with objects
• Repetitive movements or posturing of body, arms, hands, or fingers


TREATMENT

The main goals when treating children with autism are to lessen associated deficits and family distress, and to increase quality of life and functional independence. No single treatment is best and treatment is typically tailored to the child's needs. Intensive, sustained special education programs and behavior therapy early in life can help children acquire self-care, social, and job skills and often improve functioning and decrease symptom severity and maladaptive behaviors.

Basic treatment of the child includes:
 Routine immunizations as per schedule
 Treatment of any acute illnesses
 Manage sleep disturbance
 Treatment of seizures
 Normal mixed diet. Mega vitamins & food supplements are not recommended. Dietary restrictions only if food allergy is proved.
There is no medicine to cure autism. Medicines are sometimes used to ameliorate target behaviors like hyperactivity, tantrums, physical aggression, self-injurious behavior, and anxiety symptoms, when they interfere with socialization, learning, health & quality of life.

The mainstay of treatment is BEHAVIOURAL THERAPY: Various intervention modules are in use, which include:
• Applied Behavior Analysis (ABA).
Intensive Behavioral Intervention is based on Applied Behavior Analysis (ABA). Lovaas, a psychologist, first applied ABA to autism at the Psychology Department at UCLA in 1987. His idea was that social and behavioral skills could be taught, even to profoundly autistic children.
ABA starts with "discrete trial" therapy. A discrete trial consists of a therapist asking a child for a particular behaviour, if the child complies, he is given a "reinforcer" or reward in the form of a tiny food treat, or any other reward that means something to the child. If the child does not comply, he does not receive the reward, and the trial is repeated.
The rewards, called reinforcers, should be based on the interests and preferences of the individual child. They should be so interesting to the child that they are worth the hard work of responding to the therapist
The specific content of the discrete trials therapy is based on an evaluation of the individual child, his needs, and his abilities. They aim at acquisition of compliance behavior, imitation activities, language acquisition, and integration with peers.
The very young children (under age three) receive a modified form of ABA which is much closer to play therapy
Effective ABA involves 40 hr/wk of intensive 1:1 behavioral training.

ABA has a reputation for being the most successful form of therapy available for autistic children, but it also has a dis-reputation for creating robotic, emotionless children.
ABA has been more fully researched and replicated than any other form of therapy. Lovaas and his team can show significant success in their work; according to one Lovaas study: “We found that 48% of all children showed rapid learning, achieved average post-treatment scores, and at age 7, were succeeding in regular education classrooms. These results are consistent with those reported by Lovaas and colleagues (Lovaas, 1987; McEachin, Smith, & Lovaas, 1993).”
The bottom line is that therapy should be fun for the child.

• The Developmental, Individual Difference, Relationship-based (DIR®/Floortime™) Model

It is a parent oriented, developmental approach, teaching the child how to relate socially, communicate and think, based on a comprehensive framework which enables clinicians, parents and educators to construct a program tailored to the child’s unique challenges and strengths.
In the DIR model D stands for Developmental, I for Individual differences & R for Relationship-based approach.
In DIR/ Floortime model intervention program is tailored to the unique challenges and strengths of children with Autism Spectrum Disorders, to build healthy foundations for social, emotional, and intellectual capacities rather than focusing on skills and isolated behaviors.
Understanding where the child is developmentally is critical to planning a treatment program. The aim is to help children to develop capacities to attend and remain calm and regulated, engage and relate to others, initiate and respond to all types of communication beginning with emotional and social affect based gestures, engage in shared social problem-solving and intentional behavior involving a continuous flow of interactions in a row, use ideas to communicate needs and think and play creatively.
Individual differences stem from the unique biologically-based ways in which each child takes in, regulates, responds to, and comprehends sensations such as sound, touch. Accordingly, the planning and sequencing of actions and ideas also vary from child to child. Special emphasis is laid on sensory impact on the child.
Relationship with the therapist & care-giver is essential for successful therapy. The role of the child’s natural emotions and interests which has been shown to be essential for learning interactions that enable the different parts of the mind and brain to work together and to build successively higher levels of social, emotional, and intellectual capacities. Floortime is a specific technique to both follow the child’s natural emotional interests (lead) and at the same time challenge the child towards greater and greater mastery of the social, emotional and intellectual capacities. It involves a team approach with speech therapy, occupational therapy, educational programs, and, mental health (developmental-psychological) intervention. It emphasizes the critical role of parents and other family members because of the importance of their emotional relationships with the child.

• TEACCH (Treatment and Education of Autistic & Communication –handicapped Children) :

The TEACCH approach is a family-centered, evidence-based practice for autism, based on a theoretical conceptualization of autism, supported by empirical research, enriched by extensive clinical expertise, and notable for its flexible and person-centered support of individuals of all ages and skill levels.
Founded in the early 1970s by the late Eric Schopler, Ph.D., TEACCH developed the concept of the “Culture of Autism” as a way of thinking about the characteristic patterns of thinking and behavior seen in individuals with this diagnosis. The “Culture of Autism” involves:
1. Relative strength in and preference for processing visual information (compared to difficulties with auditory processing, particularly of language).
2. Frequent attention to details but difficulty understanding the meaning of how those details fit together.
3. Difficulty combining ideas.
4. Difficulty with organizing ideas, materials, and activities.
5. Difficulties with attention. (Some individuals are very distractible, others have difficulty shifting attention when it’s time to make transitions.)
6. Communication problems, which vary by developmental level but always include impairments in the social use of language (called “pragmatics”).
7. Difficulty with concepts of time, including moving too quickly or too slowly and having problems recognizing the beginning, middle, or end of an activity.
8. Tendency to become attached to routines, with the result that activities may be difficult to generalize from the original learning situation and disruptions in routines can be upsetting, confusing, or uncomfortable.
9. Very strong interests and impulses to engage in favored activities, with difficulties disengaging once engaged.
10. Marked sensory preferences and dislikes.
The long-term goals of the TEACCH approach are both skill development and fulfillment of fundamental human needs such as dignity, engagement in productive and personally meaningful activities, and feelings of security, self-efficacy, and self-confidence. To accomplish these goals, TEACCH developed the intervention approach called “Structured Teaching.”
The principles of Structured Teaching include:
o Understanding the culture of autism.
o Developing an individualized person- and family-centered plan for each client or student, rather than using a standard curriculum.
o Structuring the physical environment.
o Using visual supports to make the sequence of daily activities predictable and understandable .
o Using visual supports to make individual tasks understandable
TEACCH provides a structured teaching program where the environment is adapted to the child with ASD. The focus is on teaching independent skills that can lead to independent work in future.

o Son-rise:

This is also a program based on parent focused, developmental approach. The basic philosophy of the program is understanding & acceptance of the child.
The principles of Son Rise program state that, Autism is a neurological challenge where children have difficulty relating and connecting to those around them; most of their so-called behavioral challenges stem from this relational deficit. So, their play-oriented methods focus extensively on socialization and rapport building. The therapist joins in the child's repetitive, exclusive and ritualistic behaviors instead of trying to curb it, and, thereby builds a rapport and connection, the platform for all future education and development. Participating with a child in these behaviors facilitates eye contact, social development and inclusion of others in play.
Parents are involved, empowered & provided with the skills & training they need to help their child.
Most children on the Autism Spectrum are highly over stimulated by a plethora of distractions that most of us do not even notice. This program shows how to create an optimal learning environment so that distractions are eliminated and interactions are facilitated
The program is designed to be customized to each child's needs.
Additional therapies like sensory integration, occupational therapy etc. are included along with The Son-Rise Program® principles, making it even more effective than when used individually.
PECS (Picture exchange communications) :
This method is used to to improve communication skills with use of picture cards, communication boards etc.

I. OCCUPATIONAL THERAPY & SENSORY INTEGRATION
Occupational therapy assists in developing skills for daily activities. In autism Occupational therapy has various roles:
 Helps in developing skills like hand writing, buttoning shirts, tying shoe laces, self feeding etc.
 Developing play skills & social skills
 Basic personal skills for independent living
 Sensory integration
OT interventions include:
• Swinging, brushing, playing in a ball pit etc to help the child manage his body in space.
• Facilitate play activities that instruct & aid a child in interacting and communicating.
• Develop adaptive techniques and strategies to get around apparent disabilities.
• Sensory integration therapy is based on the assumption that the child is either hyper or hypo sensitive to sensory stimuli in the environment. They are also unable to combine the various senses (sight, sound, smell, taste & touch) to make sense of the environment. In sensory integration the child is placed in a room designed to stimulate & challenge all the senses. SI therapy aims to improve the ability of the brain to process the multiple sensory inputs, so that the child functions better in his daily activities. During SI therapy the child interacts 1:1 with the therapist and performs activities that combine sensory inputs with motion. Activities include:
 Swinging in a hammock
 Dancing to music
 Playing in bean filled boxes
 Crawling through tunnels
 Hitting swinging balls
 Spinning on a chair
 Balancing on a beamof
The focus of sensory Integration therapy is to help children with autism combine appropriate movements with the input they get from different sources.the world around

II. SPEECH & LANGUAGE THERAPY
This should focus on non-verbal & verbal communication, receptive & expressive language.

PROGNOSIS.

o No cure is known as yet. Some children do recover occassionally, but the actual recovery rate is not known.
o A better prognosis is associated with higher intelligence, functional speech, and less bizarre symptoms and behavior. Children acquiring language before age six and having an IQ above 50 may grow up to live self-sufficient, employed, albeit isolated, lives in the community.
o Many others remain dependent on their family for their everyday lives
o A 2004 British study of 68 adults who were diagnosed before 1980 as autistic children with IQ above 50 found that 12% achieved a high level of independence as adults, 10% had some friends and were generally in work but required some support, 19% had some independence but were generally living at home and needed considerable support and supervision in daily living, 46% needed specialist residential provision from facilities specializing in ASD with a high level of support and very limited autonomy, and 12% needed high-level hospital care.
o There is no increased risk of schizophrenia in adulthood
o The symptom profile for some children may change as they grow older.

CONCLUSION

Autism is not exactly a disease, its just a different way of looking at and accepting this world. Left to themselves., autistic children would have nothing to complain of. But, the real problem is that we parents and care-givers expect something different from him, which he fails to comply with, and, that creates a frustration in us, a despair, ‘How is this child going to survive in this society?’
We definitely will thrive to bring about certain changes in the autistic child, to make him more fit for this world, this society. But we must remember that it is as difficult for him to change as it is for us to change our concept of communication and relationships. So instead of burdening the poor child with all the ‘hard to accept’ modifications, cant we modify ourselves to accept him as he is? Lets try, for once, to identify ourselves with him, try to look at the world through his eyes….that might be a great help, a real eye opener.