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As per statistics, one in every 150 persons has an Autistic Spectrum Disorder (ASD), out of which 80% are males. Statistics also show that more than 4 millions people with autism, spread all over in India irrespective of background, religion, caste or class. If we consider the statistics with respect to Jaipur; 25 to 40 newborns per month are to be diagnosed with autism; i.e. in an year 300 to 450 children. While the disorder is not rare, the majority of autistic people in India have not been diagnosed and do not receive the services they need. This problem occurs in many countries, but is especially true in India where there is a tremendous lack of awareness and misunderstanding about autism among the medical professionals, who may either misdiagnose or under diagnose the condition.
Autism is a lifelong neuro-biological disorder but with early intervention & system approach it can be controlled to enable the child functional and lead a fruitful life by his adulthood.
With this intention in mind, we Parents group of autistic children have started our unique journey under an umbrella “ Approach Autism” at Jaipur to benefit people of Rajasthan and adjoining states by rendering services.
Autism is a complex neurobehavioral condition that includes impairments in social interaction and developmental language and communication skills combined with rigid, repetitive behaviors. Because of the range of symptoms, this condition is now called autism spectrum disorder (ASD).
It covers a large spectrum of symptoms, skills, and levels of impairment. ASD ranges in severity from a handicap that somewhat limits an otherwise normal life to a devastating disability that may require institutional care
Children with autism have trouble communicating. They have trouble understanding what other people think and feel. This makes it very hard for them to express themselves either with words or through gestures, facial expressions, and touch.
Autism is a complex, neurological, developmental disorder, which affects the way the brain processes information, the cause of which is still unknown.
Since the cause of autism is unknown, there is no cure for it. There is no medication, no pills; no injections which can make the autism go away.
As parent you may read or hear about many claims of cures for autism; however there is no medical cure till date…
It is vitally important that as a parent, irrespective of whatever other treatments you may choose to follow, you do not compromise on the structured behavioural training program.
A structured behavioural training program is a combination of a supportive classroom practices and specialised teaching strategies (both at home and in the school environment) is the best known treatment that can maximize skill development and achieve full potential.
A combination of a good school and parent training is the best intervention strategy.
Autism is not mental illness.
It is not caused due to bad parenting or social deprivation.
Autism is different from Mental Retardation.-There is an uneven skill profile in autism.
The type of remedies your child receives for autism spectrum disorder depends on his individual needs. Because ASD is a spectrum disorder (meaning some children have mild symptoms and others have severe symptoms) and each child who has it is unique, there are a variety of remedies.
They can include different kinds of therapies to improve speech and behavior, and sometimes medications to help manage any medical conditions related to autism.
The remedies your child can benefit from most depends on his situation and needs, but the goal is the same: to reduce his symptoms and improve his learning and development.
Applied Behavior Analysis (ABA).
ABA is often used in schools and clinics to help your child learn positive behaviors and reduce negative ones. This approach can be used to improve a wide range of skills, and there are different types for different situations, including:
Treatment and Education of Autistic and Related Communication-handicapped Children (TEACCH): This treatment uses visual cues such as picture cards to help your child learn everyday skills like getting dressed. Information is broken down into small steps so he can learn it more easily.
The Picture Exchange Communication System (PECS): This is another visual-based treatment, but it uses symbols instead of picture cards. Your child learns to ask questions and communicate through special symbols.
Occupational Therapy
This kind of treatment helps your child learn life skills like feeding and dressing himself, bathing, and understanding how to relate to other people. The skills he learns are meant to help him live as independently as he can.
Sensory Integration Therapy: If your child is easily upset by things like bright lights, certain sounds, or the feeling of being touched, this therapy can help him learn to deal with that kind of sensory information.
Nutrition
Experts don’t recommend any specific diets for children with autism spectrum disorder, but getting proper nutrition is important. Sometimes kids with ASD restrict their food or parents try eliminating things like gluten to see if it helps symptoms improve.
However, there is no research that has proven that removing gluten or casein (proteins in wheat and milk products) from their diet is a helpful treatment for ASD, and limiting foods like dairy can prevent proper bone development.
Kids with autism spectrum disorder tend to have thinner bones than kids without it, so bone-building foods are important. You might want to work with a nutritionist or registered dietitian to develop a healthy eating plan.
Autism is very different from intellectual impairment (mental retardation). When a person has intellectual impairment, there is more or less even impairment in skills in all areas of development.
Therefore, if an eight-year-old child with intellectual impairment has a mental age of five, then all his skill areas would be roughly around five years (i.e. motor, communication, social, self-help, cognition etc.).
A person with autism may or may not have intellectual impairment (Mental Retardation). However, because of limited understanding of the Autism Spectrum, many people are misdiagnosed as having intellectual impairment.
Autism does not affect the intelligence of a person. It affects the learning style of a person.
In autism, there is uneven skill development. In some areas the child may show age-appropriate skills; in some the skills may be below the developmental level; and then there are people with autism who possess skills that may be beyond their age level.
For example, an eight year old child with autism may possess some skills which are age appropriate at the eight year old level, in some skills he may be functioning at a three year old level, and for some children there may be one or two skill areas where they may be functioning at a ten year old level.
We believe that sustainable work is locally-led. Along with implementing community-owned water projects, our local partners help facilitate comprehensive water, sanitation, and hygiene (WASH) programming to protect everyone’s long-term health.
If a person with autism also has intellectual impairment (or any other condition), his training will need to primarily address his Autism. This is because autism affects the learning style of the person. That means the person with autism understands his environment and learns in a way that is often different from his non-autistic peer.
Autism affects all aspects of the person’s behaviour and development. Persons with autism learn best when the teaching is modified to accommodate their unique learning style and hence it is the ‘Autism’ that one needs to keep in mind while teaching a person with autism. Our goal should be to help the person become integrated into society and so it is important to focus on the development of social, communicative and adaptive skills.
However, for a child with cerebral palsy for instance, in addition to autism occupational therapy is also required. Similarly, for a child who also has a seizure disorder or any other medical condition, the appropriate medical intervention will be required.
There are no medical or genetic tests that can detect autism. These can only rule out other conditions. A diagnosis of autism requires a sensitive and experienced doctor or clinical psychologist to observe the child very carefully, ask the parents about the development of the child and then objectively follow internationally recognized criteria for diagnosis.
The beginning of autism may occur at birth or a child may have a period of seemingly normal development followed by a deterioration of verbal and social skills around one and a half to two and a half years. This disorder can be detected as early as a year. Autism may occur with other conditions such as mental retardation and hyperactivity, but the autistic traits in the person are typically what require attention.
All of us combine our seven senses (sight, smell, sound, touch, taste, balance, body in space) in order to make sense of and learn from our environment. Many individuals with autism have different ways of ‘sensing’ their world and often have a condition known as sensory dysfunction.
This means is that persons with autism often have trouble learning to integrate and process all the information coming from multiple sources in the environment. Their senses may be too acute (hypersensitivity), or working on a reduced level (hyposensitivity), or there may be a combination of both. Sometimes the sensory dysfunction results in self-stimulatory behaviours such as unusual finger or hand movements, rocking, mouthing, spinning etc. as natural responses or methods of coping with the sensory difficulties. When sensory information is faulty the world can be confusing and these self-stimulatory behaviours often help the child with autism relax.
People with autism have an impairment that can be characterized as a deficit in imagination.
Imagination or creative thinking is easily observed in children through their drawings, comprehensions/essays, play behaviour or things they do in their free time. However individuals with autism, unless taught or told, are unable to think of or imagine things that they can do in their free time, as a result many of them spend their time doing the same activities, or simply running around or jumping about.
Many autistic children show little or no interest in toys. Some handle toys and other objects purely for physical sensations e.g. to bang, put in the mouth, for the sound it makes, light that flickers, etc. Some enjoy concrete play such as puzzles or computer/video games. A common activity for children with autism is lining up or stacking similar objects like pencils, blocks, toy cars, glasses, bottles etc. Some others use objects for their obvious purposes, such as toy broom for sweeping, or rolling cars back and forth.
Some children do develop a sequence of events that appears as if they are playing, but a close observation shows that the sequence is often repetitive and not built upon or modified. A car is a car and remains a car. It does not become an aeroplane, fly in the air, or climb the walls.
Other children with autism are able to learn basic pretend play behaviours, but, again, the stories may be repetitive and may not grow and develop. So a little girl may learn to bathe her doll but refuse to dry the doll with a small hand towel, as one would during pretend play. She may insist on using a regular towel.
After the bath she may go on to dress, comb and feed the doll. But the play may not progress beyond the bath routine. For instance, she may never place the doll on a toy car pretending to take her for an ice-cream. They learn only what they are taught or told.
Another consequence of this impairment is the narrow range of focused interests. Often all activities including play revolve around those special interests.
For instance, some children may enjoy transportations and may look at pictures, advertisements, and collect toys or talk only on this theme and have no other variations in interests. Sometimes, these special interests can revolve around unusual objects such as strings, brooms, pebbles, wrappers, or any household objects or activities like scribbling, drawing or tearing paper and the play may remain focused on only these objects or activities.
Autism is considered a spectrum disorder where symptoms and characteristics present themselves in a variety of combinations, from mild to severe and in any combination. A more able individual
with autism might simply seem eccentric (with strange behaviour), a loner (a person that prefers not to associate with others).
Severely affected individuals may hardly communicate and prefer to function primarily in ‘their own world’. Most of the individuals fall in the middle category of this spectrum (Moderate).
A detailed assessment by a competent professional is important for making the correct diagnosis which will further help in tailoring the intervention program specific for each individual. Standardized diagnostic assessment tools can be administered to assess the skill level of the child. Based on a test, professionals ask questions from parents to assess the presence and absence of behaviours. A score is then given to categorise the person with mild, moderate or severe autism. However, with the new and improved understanding of autism, professionals are beginning to understand that a person either has autism or not. A functional assessment can also be done to understand the current strengths and needs specific to each child.
With support ALL children with autism make progress. If intervention is not provided the person with autism faces greater difficulties. The way people with autism learn, understand, communicate and interact people is different.
The teaching is approached with an understanding of the unique learning styles, and requisite accommodations to function to the best of her/his abilities, both at home and school.
The key to ‘good’ intervention for any individual with autism to understand the condition, understand the unique ways in which individuals with autism think and learn, accept their autism as a vital and a vibrant part of their being, then approach the intervention, the teaching skills, and /or changing of behaviours, from that paradigm of understanding and acceptance.
On the basis of a functional assessment by a competent professional, intervention plans are tailored based upon the individual strengths and needs of each specific child. The intervention plan may use one or a combination of some of the proven effective techniques such as: Treatment and Education of Autistic and related Communication handicapped CHildren Method (TEACCH) Treatment and Education of Autistic and Communication related handicapped CHildren) is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders. Applied Behaviour Analysis (ABA) emphasizes on one-to-one sessions to develop cognitive, social, behavioural, fine motor, play, social and self-help skills.
The technique involves structured presentation of tasks from most simple to more complexes, breaking them down into small sub-skills and then teaching each sub-skill, intensely, one at a time. It involves repeated practices with prompting and fading of prompts to ensure success. It uses rewards or reinforcement to help shape and maintain desired behaviours and skills. Verbal Behaviour Analysis (VBA) Applied Behaviour Analysis with an emphasis on Verbal Behaviour (ABA/VB) is a methodology, based on research, that is used to address functional skills, such as language/communication, self-help skills, play skills, social skills, and complying with instruction
Picture Exchange Communication Systems (PECS) allows children with autism who have little or no communication abilities, a means of communicating non-verbally. Children using PECS are taught to approach another person and give them a picture of a desired item in exchange for that item.
It is important to remember that it is not just the ‘Speech’; it is communication as a whole with which the child has a difficulty, which includes both understanding of language, as well as expressing him/her self through speech or any other mode.
Every child with autism can benefit from an intervention that emphasizes communication and understanding a language in which he / she can communicate appropriately and express their needs and desires.
Speech therapy can help some children. However, it is absolutely necessary for the speech therapist to understand autism and also the individual child otherwise the conventional methods of speech therapy might not be of much help for the child with autism, because the inability to speak is not a physical problem.
Due to the development of verbal and non-verbal communication, people on the autism spectrum find it hard to interact with others and make friends. Many of them want to make friends but are unable to do so because they do not understand ‘HOW’ to make friends. Even with adults, individuals with autism (both verbal and non-verbal) often find it difficult to communicate spontaneously i.e. showing the other person things of their interest e.g. a monkey, a dog, an aeroplane.
A person with autism may come home and show a note in the dairy or a birthday gift, but may not be able to describe what happened or the feelings s/he may have experienced. Many children with autism show affection, smile and laugh, and demonstrate a variety of other emotions, although in varying degrees. Like other children, they respond to their environment in both positive and negative ways.
Some with autism who seem ‘aloof’ appear to be in a world of their own, absorbed in their activities and show little interest in another person. Some people with autism may be comfortable with other children being in their vicinity but will not approach them by themselves. Some people on the spectrum actively enjoy but appear distinctly odd in their interaction. They make active approaches to other people on their own, but may do so in an odd, inappropriate, repetitive way such as hugging or pushing others. Then there are others who are seen as stilted and over-formal.
They often stick to the rule which they have learnt and get disturbed in the situation where a ‘new’ rule is to be applied, or a previously learnt rule needs a modification. They avoid such situations or behave in a ridged or a strange manner.
Children with autism enjoy watching other children and may want to be near them but may feel hesitant, unsure and even scared to join them in their activities. Some others may be comfortable and even enthusiastically approach, but may lack the spontaneity to initiate play.
Their play behaviour may include only repeating what others are doing, e.g. running after one another, playing ring-a-ring-of-roses. As they grow older, they find it difficult to understand and follow social rules of games, such as getting ‘out’, taking turns or participate in make-belief play. As a result, individuals with autism have none or few friends of their age. They find it easier to relate to older people who can tell them what to do and or with people younger to them who will do as they are told. In both situations the expectations and responsibilities on the individual with autism is less.
With the guidance of a supportive adult, children on the spectrum can learn ways to interact with other children appropriately.
Some people with autism display remarkable abilities and skills,
ï‚· At a young age, when other children scribble and draw straight lines, some children with autism are able to draw detailed realistic pictures in three-dimensional perspective.
ï‚· Some toddlers are so visually skilled that they can put complex jigsaw puzzles together.
ï‚· Some of them who have a keenly developed sense of hearing can play musical instruments they have never been taught, play a song accurately after hearing it once, or name any note they hear.
ï‚· Some individuals with autism can memorize entire television shows, phone directory, or bus/train timetables; others can calculate day of the week from a date or may have exceptional arithmetic skills.
ï‚· Some have an excellent ‘photographic’ memory for places or things
ï‚· Some children can read beyond their developmental age and even before they can speak. Not all children diagnosed with an autistic spectrum disorder may have these savant abilities and skills.
Hence, it is incorrect to believe that all people with autism have a hidden skill that just needs to be ‘brought out’. Such skills do not always serve a person with autism well. If too much of focus is given on these skills of autistic children then the core areas of difficulties like communication and social skills, basic daily living skills are neglected.
The Child with autism requires a early intervention with a structured behavioural training program in a combination of a supportive classroom practices and specialised teaching strategies both at home and in the school environment. A combination of a good school and parent training is the best intervention strategy. Be it any part of the world training at school and home is important. Even though in India the number of services and resource persons would be fewer as compared to other countries, however the quality of services and professionals available are par with any other countries worldwide. The decision of relocating would have its own advantages and disadvantages, and each family should weigh them in order to make appropriate decision. Along with the resources available for the child, the resources available for the family also need to be considered in making the decision. The strong support system available to the child in India can prove to be a significant factor/aspect of improvement of child’s social skills.
The essence of marriage is companionship. It is a union between two adults and it involves adjustment and carrying on day-to-day responsibilities of life. It also involves the ability to the plan for the future etc. Before deciding upon marriage, there are some factors that are needed to be considered by the person with autism and his/her family:
The level of functioning of the person, his/her ability to take on the responsibilities that are integral part of the marriage The partner understands the needs and knows everything about the autistic spouse (if one of them is not autistic). Financial status (employment, family support etc.)
However, since marriage is an issue of social commitment and companionship, by the very nature of the condition, many able people with autism choose not to marry and their families respect and agree with that decision.
‘What after me?!’ is probably the greatest fear that plagues every parent of a child with a Special need. Unlike some countries in the west, in India there are few hostels/ residential facilities for people with mental disabilities, and there are no or very few specialist hostels or residences that are currently available for people with autism in India.
It is now increasingly accepted that during the early years of development, it is very important for an autistic child to live and grow in a home environment. As the child grows, he/she can be trained to live in a residential facility or a group home since that may be the need of the hour after the parents are no more or are ill and unable to provide the necessary support to the adult with autism.
It is necessary that any such residence is not a place where one just ‘dumps’ the adult, but one that provides a structured environment, and predictable routines where individuals with autism are able to function independently to the best of their capacity. Such environments would foster independence while still providing the support that adult residents may require. It is also very important for autistic adults living in such residences to have ample opportunity to integrate with society in general so that they do not live isolated lives.