When a child is diagnosed to be in the autism spectrum disorders, parents feel various reactions. Most have not heard of the term. Some parents have done a net search and suspect the condition in their child only to have their worst fears confirmed, some are confused and seek reassurance whether the child will be cured. There is more confusion when the discussion is started on different types of treatments required for the child. Words such as ABA or behavior therapy, occupational therapy, sensory integration etc are words that they have never heard before and leave them completely bewildered and overwhelmed.
First thoughts that arise in their minds are
He is fine, he plays on computer, knows to get what he wants
We did not teach him to point. It is our fault
Are any scans or tests required?
Autism is a condition that affects 1 in 88 individuals in the west. Exactly how common is it in India is not clear. But all doctors agree that they are seeing more children being diagnosed with ASD than ever before. It mainly affects the child’s interactions with parents and others, difficulties in developing speech, understanding of other’s speech and behaviors that may be repetitive.
A child who has been diagnosed with ASD may exhibit some of the behaviors described below to various degrees of severity. Severity may be mild to more severe. That is why it is called a spectrum disorder. All children will not be having all the symptoms.
Human beings are essentially social beings. Infants typically interact with the parents by smiling, gazing at the face, cooing and babbling at them, exchanging and sharing gaze, responding to parents’s voice and interactions by cooing back or vacalising in a back and forth manner. Children in the Autism spectrum do not exhibit these behaviors. Instead they may avoid eye contact, or eye contact is fleeting, do not pay attention when spoken to, may not be able to modulate their gaze to suit the interaction. They may not seek parent’s attention and prefer solitary activities like playing. They do not show or share their interests with others and engage in their activities oblivious to their surroundings.
Older children have difficulty in greeting people, understanding the situation, knowing how to play with other children, holding a back and forth conversation or exchange with others. Sometimes they may say inappropriate comments. They may not be able to understand the concept of personal space, may stand too close to a person and sometimes may act overly familiar.
Communication impairments are seen typically as speech delay, not using words or gestures to communicate. Examples of gestures are pointing, shaking head ‘no’, nodding head for ‘yes’, expressive use of hands, face and voice to communicate. There may be repetition of words heard in or out of context, confusions with pronouns such as ‘you, me, mine, I’ difficulty in making flexible sentences to communicate. For example, when a child wants to go out he may just say ‘bye’ to convey ‘take me out’.
The third aspect of this spectrum is the repetitive behaviors and restricted interests, which may be seen as doing something over and over again, being interested in certain topics like train schedules to the exclusion of others., lining up toys, disturbing the toys and rearranging, watching spinning wheels, fans continuously. These may interfere with normal day to day activities.
What to do if you suspect if your child may be having symptoms of ASD?
Contact your pediatrician , discuss your concerns clearly and ask for a referral for developmental evaluation of the child
What is a developmental evaluation?
Developmental evaluations are detailed assessments of the child’s developmental profile, which includes
1. Interview with parents, complete history including birth, past illnesses, hearing, speech and other milestones, ,
2. Observation of the child’s communication and interaction,
3. Examination of the child, and
4. Developmental testing using a standardized scale or instrument wherein the child will be given simple tasks to do like playing with blocks, to name a few pictures etc., and then to reach a score based on his abilities and thereby to determine areas of strengths, weaknesses and delays in development.
Additional evaluations may be required depending on the age of the child and the degree of severity of symptoms.
Who does the evaluations?
Evaluations are usually a team work, usually initiated by the developmental pediatrician and may include assessments by speech and language therapist, occupational therapist and a psychologist. Inputs from all the professionals are then pooled together to understand the child’s developmental profile, needs and a diagnosis.
What is the treatment for ASD?
At present there is no medical treatment for ASD. Which means we do not have any medicine that can be give to cure the condition. The mainstay of treatment is therapies or training the child with a combination of therapies.
What is early intervention?
The term early intervention means taking action, initiation of therapies in a child with developmental delay as soon as the delay is recognised. If a delay is identified, early intervention may be initiated even before a formal diagnosis is established or while awaiting results from any tests.
Early intervention can help a child to reduce the degree of delay, achieve milestones, teach functional skills and reduce difficult behaviors.
It will improve the overall development of the child, help child to adapt and cope better.
What are the current therapies that are recommended?
Behavior therapy, occupational therapy, sensory integration, speech and language therapy are recommended commonly for ASD.
What is behavior therapy?
Behavior therapy refers to methods based on Applied Behavior Analysis or ABA programs. These have evolved in the western countries. These are highly structured programs, wherein skills are taught by breaking them into small steps, several repetitions and opportunities are given to practice and learn each step until the goal is reached. Prompts and reinforcements are used to keep the child motivated. Continous records are kept of the child’s progress and adjustments are made depending on the child’s improvement.
However, at present only in larger cities of India like Bangalore, Mumbai and Delhi, ABA therapists are available. Most therapy centers in India use a combination of techniques and methods and may not be typical ABA therapy
There are also other therapies which you will come across in the net such as floor time, verbal behavior, RDI etc. Further explanations on these may be found from this link. http://depts.washington.edu/isei/ptrl/upload/100_day_kit.pdf
What is Occupational therapy and sensory integration?
Occupational therapy helps your child to learn functional skills. After an assessment, OTist sets the developmental goals for the child, plans a set of activities and strategies to make the child independent. These goals may be related to feeding problems, dressing, play, toileting, fine motor skills, or sensory integration. Typically these sessions last for 30 – 45minutes. A home program is also given for practice.
Sensory integration is also carried out by the OTists. Children in the ASD spectrum frequently have problems in processing and organizing information received through the senses for vision, hearing, touch, body movement etc. This processing and the feedback by the brain are disturbed in these children interfering with their overall development. Sensory processing problems may present in different ways such as hyperactivity, food refusal, and sensitivity to sounds, preference or avoidance of certain textures.
The goal of Sensory Integration therapy is to improve sensory processing abilities. Variety of techniques, and play materials and play equipment like swings, trampolines, ball pools, play tunnels are used for this. Usually OTist carries out Sensory Integration also.
What is the role of speech and language therapy?
The aim of speech and language therapy is to help the individual learn functional communication. Therapists use different techniques depending on the goal to be achieved which is set after an evaluation. In some it may to teach use of gestures and signs, in some it may be prelinguistic behaviors like looking, listening, following commands and in older children it may be building vocabulary and achieving clarity of speech.
How long should these therapies be continued?
It is better to be prepared to continue therapies for a couple of years or more. Goals and priorities may change as the child grows and therefore it is better to take stock at regular intervals and decide on best options and therapies.