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Autism Spectrum Disorder

Autism is a development disorder that appears in childhood. It affects the development of communication and social interaction skills. The term Autism Spectrum Disorder (ASD) was previously used to refer to a spectrum of conditions including Autistic disorder, Asperger’s disorder, Childhood Integrative Disorder, or Pervasive Developmental Disorder – Not Otherwise Specified. However, it is now recognised that the severity of symptoms and behaviours vary from person to person, ranging from a mild learning and social disability to severe impairment with multiple problems and highly unusual behaviour. To allow clinicians to fully account for these variations, ASD is now considered to be a continuum.[1] This also allows people whose symptoms have not been recognised until social demands exceed their capacity to receive the diagnosis.

Classic autism is usually detected at birth or within 2 years of birth in a child who has shown normal development until then. However, speech develops normally in children with high-functioning autism and Asperger’s syndrome, so these conditions are not noticeable until the child is older. The average age of diagnosis of Asperger’s is around 7 years.

It is not affected by race or country, though it seems to affect more boys than girls – 4 out of 5 children who have autism are boys. A possible reason cited is that it may be more difficult to recognise autism in girls. Another explanation by Hans Asperger suggests that autism is an extreme form of ‘male’ behaviour thus may naturally occur more in boys than girls.

Recognizing Autism Spectrum Disorder
What Causes ASD

There is no single known cause for ASD. However recent research has shown that it is caused by abnormalities in brain structure or function.

Factors thought to increase the risk of developing ASD are[2]:

  • Genetic: One suggestion is that certain genes inherited by a child from his/her parents could make him/her more vulnerable to ASD. However, so far, no specific gene linked to ASD has been identified.
  • Environmental: Some researchers suggest that a child is born with a vulnerability to ASD. He/she develops the condition only when exposed to a specific environmental trigger. Factors thought to increase vulnerability include premature birth (born before 35 weeks of pregnancy) and exposure to alcohol during pregnancy.
  • Neurological: Brain scans of children with ASD show differences in shape and structure of the brain compared to those of neurotypical children. This is used to explain the phenomenon that persons with ASD experience an extreme emotional response upon seeing a trivial object or event, thus explaining their fondness for routines.
  • Other health conditions – Some other conditions known to be associated with autism are:
  • Fragile X Syndrome: an uncommon genetic condition that usually causes certain facial and bodily characteristics, such as a long face, large ears and flexible joints.
  • Tuberous sclerosis: a genetic condition that causes multiple non-cancerous tumours to grow throughout the body, including the brain.
  • Rett Syndrome: a genetic condition that mostly affects girls, and causes difficulties with physical movement and development.
  • Neurofibromatosis: a number of genetic conditions that cause tumours to grow along the nerves.
  • Muscular dystrophy: a group of inherited genetic conditions that gradually cause muscles to weaken, leading to an increasing level of physical disability.
  • Down Syndrome: a genetic condition that typically causes some learning disability and a characteristic range of physical features.
  • Cerebral Palsy: condition that affect the brain and nervous system, causing problems with a child’s movement and coordination.
  • Infantile Spasms: a type of epilepsy that develops while a child is still very young, typically before the age of 1 year.
  • Intellectual Disability: around half of those diagnosed with ASD have an IQ below 70.

 

What are the signs and symptoms of a child with ASD?

Early symptoms of ASD in infants and toddlers are:

  • At 6 months – No big smiles or warm, joyful expressions
  • 9 months – No back-and-forth sharing of sounds, smiles or other facial expressions
  • 12 months – No back-and-forth gestures such as pointing, showing and no babbling
  • 14 months – Visible difficulties in communication, social and motor skills
  • 16 months – No spoken works or speech limited to parroting what has been heard
  • 24 months – Repetitive behaviour and social impairment

Other symptoms of ASD include:

  • Social interactions and relationships: Based on the concept known as “theory of mind”, one strand of research suggests that children with ASD have a limited ability (or none at all) to understand other people’s mental states, their different sets of intentions, beliefs, emotions, likes and dislikes.[3] As a result, a young child with ASD finds it difficult to interact socially and pays more attention to objects than to people. He/she seems to live in a world of his/her own. The child may show attachment to adults he/she knows well, but be indifferent to children of his/her own age. For instance, he/she does not smile when smiled at, has poor eye contact, gets things for himself/herself only, and seems to tune people out.
  • Verbal and nonverbal communication: A young child with ASD finds it difficult to communicate through language or gestures. Children with autism have difficulty developing expressive language, i.e., speech. However, this varies from a child having no speech through one who is able to ask for his/her needs only to one who talks at great length about things that interest him/her. Children with autism usually have better receptive language than expressive language. A common problem is that he/she does not respond to his/her name. The child appears deaf, and does not follow directions. He/she may echo and repeat words or phrases.
  • Limited interest in activities and imaginary play: In a normal child, imaginative play begins around 18 months of age. A small minority of children with ASD play creatively but tend to repeat the same activity over and over again. A child with ASD does not know how to play with toys, though some may show unusual attachment to toys, objects, or schedules (i.e., always holding a string, or having to put socks on before pants). He/she seems to prefer to play alone and spends time lining things up or arranging things in a certain order.
  • Other behaviour: He/she appears deaf, and if you observe carefully, he/she is insensitive to some sounds and over-sensitive to others. The child exhibits abnormal facial and bodily movements like grimacing, hand flapping and jumping, throwing intense or violent tantrums, and walking on toes. He/she may show indifferent to pain, heat or cold, and a fascination for bright lights and spinning objects. He/she has an obsessive desire for sameness and difficulty in adapting to change.
Diagnosing Autism Spectrum Disorder
How is ASD diagnosed? What does the assessment procedure entail?

The main thrust of the diagnosis of ASD is to check whether the symptoms that the child has, are due to ASD or to a medical or other condition. The diagnosis is not made using empirical biological tests, such as blood test or brain scans. The diagnosis is made after an expert psychologist considers the following information:

  • A developmental and clinical history of the child
  • Observation of behaviour
  • Testing of cognitive functioning
  • Receptive and expressive language assessment

Many parents and physicians tend to downplay early signs of ASD, suggesting that symptoms are “just a phase” or a sign of a minor delay in development. Approximately 50% of children seeking a diagnosis are put on a wait and watch list, and the diagnosis is deferred.

 

Whom do I approach for diagnosis?

Parents are the in the best position to pick up earliest warning signs or symptoms of ASD, as they can observe the absence of common behaviour (rather than abnormal behaviour) in their children. Once early warning signs have been observed, it is recommended to seek expert consultation from a:

  • Paediatrician
  • Psychiatrist
  • Clinical Psychologist
  • Speech Pathologist
  • Multidisciplinary team comprised of GP and school staff, as well as speech, language and occupational therapist.

 

What should I do post-diagnosis?

A diagnosis of ASD in a child can be overwhelming. You may find it helpful to hear from other parents – for example, through Parent Support Groups. Learning from their experiences can be a reassuring way to adapt to the diagnosis.

Intensive early intervention is vital when it comes to dealing with ASD. Seeking intervention with specialists early is highly recommended.It is also recommended to screen for related medical issues (Check the FAQ section for a list of related medical issues).

Living with Autism Spectrum Disorder
ASD in childhood

Given the right support, a child with ASD can learn to lead a fulfilling life and make a valuable contribution to society. As a parent of a child with ASD, you play an important role in helping your child reach their full potential. There are a number of interventions you can make at home, but you may also need to seek out professional advice and specialist support.

What is the importance of early childhood intervention for a child diagnosed ASD?

Early detection and intervention is extremely important. It helps to ensure that children with ASD function better and are successfully integrated into society.

An estimated 75% of brain development takes places by 2 years of age; hence, early detection and intervention in the first 2 years is essential to address ASD effectively and help the children reach their full potential. Early diagnosis also means that plans for treatment of congenital malformations, and other medical conditions, along with developmental, educational, and vocational services can be made in time.[4] Early intervention entails a program of therapies, exercises and activities, designed to specifically help your child and the whole family, through information, advocacy and emotional support. These can be carried out at home, as well as through specialist interventions.

What interventions are made for a child with ASD?

Each individual with ASD is unique, and so each intervention programme should be tailored to address specific needs. Early intervention is usually intensive and behavioural. It generally involves a child’s entire family who work closely with a team of professionals. The multi-disciplinary team usually includes a physician, speech-language pathologist and occupational therapist. In addition, other therapies are delivered through specialised centres, classrooms or preschools, which must involve opportunities to interact with typically developing peers. It is important to have structured, therapeutic activities for at least 25 hours per week, and engage parents in both decision-making and delivery of treatment. The child’s progress must be regularly recorded and evaluated.

Types of interventions for children with ASD include:

  • Applied Behaviour Analysis (ABA): ABA is a method of teaching that is often used to help children with ASD. The idea is that a child is more likely to learn skills more effectively when he/she is rewarded for his/her performance. In ABA, tasks are broken down into small units that are easily achievable. These are then taught in a structured way and each step is rewarded with something pleasurable, such as play with a favourite toy or a small bite of food. Inappropriate behaviour is ignored while guiding the child towards more acceptable behaviour.
  • Speech and Language Therapy: Speech therapists working with nonverbal children with ASD should consider alternatives to spoken word such as singing, writing, typing. They may also use a Picture Exchange Communication System (PECS), a tool which uses pictures of familiar objects to progress communication with a nonverbal child.[5] Speech therapists can also help children to cope in school by designing communication systems that can be used within the school setting to facilitate social interaction between peers and adults.
  • Occupational Therapy: Focuses on improving fine motor skills, self-help skills, play skills and or sensory-motor skills that include balance, awareness of body position and touch.
  • Group Therapy: Focuses on socialisation skills, such as sharing things and ideas, maintaining eye contact while interacting, body language, decision-making, etc.
  • Music Therapy: It has been used to help children with ASD for many years, as they often pay more attention to music rather than spoken words. It is thought that music can stimulate and develop communication in some people with ASD. Music therapists usually work directly with the child, where they may give him/her an instrument to play with and when the child makes a sound with it, respond with the same sound or develop a rhythm.
  • Diet and Vitamins: Although research on the effects of diet on people with ASD is on-going, some doctors believe that this therapy may help children with ASD, particularly those whose autistic behaviour has not appeared until around two years of age. Some people have reported that diets that exclude gluten (present in foods containing wheat flour) and dairy products (milk, cheese, cream, curd) can help reduce autistic behaviour in children. Vitamin therapy has been better researched. Vitamin B6 and magnesium may help some children with ASD, but only those deficient in B6. Vitamin C has proven effective too as it plays a part in keeping the brain working properly.

What kind of care can I provide to my child at home?

Caring for a child with ASD requires a proactive approach. Here’s what you can do:

  • Educate yourself about ASD: Understanding the condition helps you to know what to expect and plays an important role in helping your child develop independence.
  • Work closely with other carers: This involves close communication with all the health professionals involved in your child’s care. The best treatment for children with ASD is a team approach with a structured, consistent program for the following goals:
  • Education
  • Identifying and managing symptoms of autism and related conditions
  • Behaviour and interactions with family and peers
  • Provide frequent positive feedback on your child’s performance to encourage positive behaviour. Give more attention and positive reinforcements for good behaviour and let your child know you are upset when they exhibit negative behaviour like throwing tantrums.
  • Use of gestures and objects while speaking to the child will help your child in developing language and communication. For e.g. hold up a biscuit when you say “Do you want a biscuit?”
  • If you see your child touching a stove or electrical socket, prevent them every time they try. They will get the message through persistence.
  • Be consistent with rules and consequences – it will help your child to develop more appropriate behaviour.
  • Always tell them beforehand when it’s time to do something e.g. talk about bedtime or making the bed together 30 minutes ahead of time so they will know what to expect and therefore reduce the chance of anxiety.
  • Have a mix of routines and variations for your child’s daily activities. For example, fix a time for baths, bedtime and meals. Routine makes your child comfortable, but because rigidity is part of the behaviour, be sure to vary other activities.
  • Avoid any sudden changes as children with autism frequently have trouble adapting. Gradual transitions are important in case of changes.Schedules can be a useful way of helping the child adjust.
  • Promote healthy growth and development – Ensure that your child undertakes physical activities and exercise. This not only promotes a healthy weight and body, but also builds self-esteem, confidence and friendships with other children.

How do I know my child is making progress?

The progress of the child with ASD can be assessed easily by observation. A general rule is to try a treatment for at least 3 months. In some cases, we can see clear indications that the child is improving, even after a week or two. In other cases, it might take up to 6 months for the intervention program to show visible progress.

Timely feedback from teachers, friends and relatives on the improvement of your child could be conclusive of how the treatment of progressing.

It is important to note that treatments effective for one individual may not be as effective or another individual since ASD is a spectrum disorder. Careful observation along with a critical perspective will allow you to decide whether or not a treatment is beneficial.

Should I enrol my child in a special education program?

The right type of schooling for your child will depend on his/her individual needs, abilities and interests. Some parents find that special schools are better able to deal with the particular needs of their child, provide more individual attention and help their child to develop. However, many children on the Autism spectrum are educated in mainstream schools. They may receive additional support from special educators.

Before you make a final decision, visit a number of schools and speak to teachers to get an idea of which environment will be best for your child.

 

ASD in adolescence

Parents and caregivers want their children to be happy and healthy, lead fulfilling lives, and become happy adults. All individuals with ASD, regardless of the level of support needed, should be able to live lives that are filled with dignity, choice and happiness.

Many adolescents with ASD will want to date, socialise, and form intimate relationships. You can help your child develop healthy relationships by teaching appropriate social skills and behaviour. Peer acceptance and self-esteem are affected by how well your adolescent child addresses these issues.

Here are some tips:

  • As your child enters puberty, teach them proper grooming and hygiene.
  • Encourage your child to take part in school and community activities.Provide opportunities for your child to form healthy friendships. This is critical for your child’s happiness and sense of belonging.
  • Be aware of the social difficulties and vulnerabilities your child faces. Start early to prepare your child for healthy adult and intimate relationships.
  • Teach them about consent and how to respect their own body as well as the bodies of others.
  • Provide sex education in an honest and easy to understand manner. Talk about the reproductive as well as the intimate aspects of sex.
  • Talk about birth control and safe-sex practices to prevent sexually transmitted infections.
  • Discuss morals and beliefs with your child.

Becoming an adult is a gradual process. It is a journey with highs and lows. When, where and how to plan for the future as an adult will be unique to each individual and based on their individual needs, desires, unique strengths as well as challenges.

Individuals with ASD span a very wide spectrum of abilities and needs. There is currently no reliable measure to determine how severely a child may or may not be affected and no way to predict or make a generalisation about how any individual child will grow and progress. Factors that determine how a child responds to a treatment program include: the child’s age at the time of diagnosis and initial intervention; how ASD affects the individual child; how well tailored the intervention is to the child’s needs; and so on. With appropriate intervention and teaching all children on the spectrum can show significant progress – even children with severe delays and exceptionally unusual behaviours. There is no child for whom treatment is ‘not worth the effort’. Individuals with ASD can continue to master skills throughout their lifetime.

As they age and mature, individuals can overcome many of their communication and social challenges and master various coping strategies. However some social and communication challenges that are core to the condition remain. These must determine the choice of further education, work and employment, and living options in adulthood.

It is important to start planning for the future as early as possible. The worst thing to do is nothing! It is important to plan ahead; having a plan for the future can lead to a high quality of life as an adult.

As their schooling comes to a close individuals with ASD and their parents will have to start exploring work options while a few may want to pursue further studies. For those individuals with ASD who have a goal of pursuing a college education it is important to find a good match for their strengths, interests and any support that they may need when choosing a college or technical career program.

Key points to consider when choosing a college are:

  • Find out what types of colleges are a match for the individual’s interests and skills.
  • Determine whether the child will need support while attending college, and find out what support if any is available.
  • Decide whether to disclose disability when applying to the college.
  • Decide what size of college would feel the most comfortable.

The transition to a post school education setting means having more and different responsibilities than in high school. Students with ASD often face challenges in college with learning how to act in classes, how to manage their course load and how to manage social relationships that are unique to the college experience. Students need to be supported with as much information as possible ahead of time about their new responsibilities and the new settings.

During your child’s teen years, you could also start to plan for future jobs and living arrangements. Vocational training helps many young adults learn how to work in many settings, such as stores, restaurants, and hotels.

Many people who have ASD live independently as adults or in homes/apartments with support services. But most group homes and community centres require a basic level of self-sufficiency, such as being able to eat, dress, and bathe independently. Occupational therapists can assist in these transitions.

 

ASD in adulthood

Many people with ASD go on to live independent and fulfilling lives. They often have regular jobs, build strong friendships as well as romantic relationships, and take part in community activities. As parents, you should encourage his/her interests, such as in art, theatre, music or literature. With better interventions and support, better outcomes in all spheres of life or can be expected.

With the current state of educational and support services available, the vast majority of adults with ASD will likely require fully sheltered workplaces, more commonly referred to as ‘vocational centres’. A vocational centre provides a range of work opportunities that are tailored to the needs of each individual. Such centres typically provide structure and predictability that promote independent functioning for an enhanced and successful, as well as dignified work experience. Vocational centres may be run by governments, but in most cases in India, are run by NGOs. Sheltered workplaces in vocational centres can provide structured employment to individuals who need different levels of high support.

There is growing evidence that a small minority of persons with ASD progress to the extent that they no longer meet the criteria for a diagnosis of ASD. An adult with ASD benefits greatly from working outside the home and having social activities. Unfortunately, prejudice against persons with ASD often bars them from the mainstream workplaces. Employers often make assumptions about what a person with challenges can and cannot do, when in reality they have a wide range of abilities.

Many adults with ASD live semi-independently in assisted living facilities and group homes. For more information, visit the section on Persons with Challenges.

Frequently Asked Questions
Q: Does a cold family environment cause ASD?

Though the causes of ASD are not known, it is definitely not caused by:

  • A cold family environment
  • An aloof mother
  • Poor parenting
  • Mishandling by the family

 

Q: Can a child with ASD ever live an independent life?

ASD is a spectrum disorder. Depending on the child’s individual skill profile and the appropriateness and intensity of intervention they receive, children with ASD can lead relatively independent lives.

 

Q: Why is my child hyperactive?

Hyperactivity can have a medical reason. Often, children with ASD are restless because of an impairment of their imaginative and social skills. They cannot play with their toys and other children meaningfully, and find it very difficult to keep occupied. Hyperactivity can be reduced as children are taught new skills and ways to occupy themselves.

 

Q: Why does my child keep playing with his/her fingers, rocking back and forth, and spinning around?

Children with ASD respond to sensations in a different manner. They often have a condition known as sensory dysfunction that means either an over- or under-stimulation in any one or more of their sensory modalities (hearing, sight, taste, touch, smell, balance). One theory is that these mannerisms like flapping and rocking are natural responses or methods of copying with sensory difficulties. These behaviours can sometimes help them to relax and are often referred to as ‘stimming’.

 

Q: Do children with autism suffer from seizures?

Autism may occur alone, or accompany intellectual disability or seizures. One of every 3 children with autism will have at least 1 epileptic fit before they reach adulthood, while some may have a history of fits right from infancy.

 

Q: What is regressive ASD?

Most children with ASD start to develop communication skills, respond well socially and play appropriately, and then regress, usually between the ages of 12 and 24 months. They may become socially and emotionally isolated, and lose most, if not all language. Such regression should be treated as a possible sign of regressive autism. There is a better chance of improvement with an early diagnosis and intensive treatment.

 

Q: Is ASD accompanied by other conditions?

In many cases, achild with autism might have related conditions:

  • Low intelligence quotient or IQ
  • Seizures
  • Chronic constipation and/or diarrhoea
  • Sleep problems
  • Pica (eating paint, dirt, paper)
  • Low muscle tone
  • Sensory Processing Disorder
  • Allergies
  • Pain
  • Hearing and visual impairments

 

Q: How is ASD different from an intellectual challenge?

When a person has an intellectual challenge, there is more or less even impairment in skills in all areas of development. Therefore, if an intellectually challenged 8 year old child has a mental age of a 5 year old, then all his skills would be roughly around those of a 5 year old (motor, communication, social, self-help, cognition). In ASD, there is uneven skill development. Children with autism may show age-appropriate skills in some areas but not in others.

 

Q: How can ASD be prevented?

Although the precise cause of ASD is not known in most cases, some of them are preventable. Some steps that can be taken to reduce the risk of ASD are:

  • Prior to conception: Immunisation again rubella (German measles) before becoming pregnant.
  • During pregnancy: Avoidance of alcohol and drugs during pregnancy (with the exception of medical drugs prescribed by a doctor).
  • After pregnancy: Early diagnosis and treatment of phenylketonuria (PKU); early diagnosis and treatment of celiac disease.

 

Q: Is there any cure for ASD?

While ASD is not ‘curable’, the behaviours that accompany the condition can be improved, especially if diagnosis occurs early in life. Since it is a spectrum disorder that affects different people in different ways, it can be difficult to predict how a person with autism will develop over time. Interventions can involve behavioural treatments, medicines or both. Addressing related medical conditions such as sleep disturbance, seizures and gastrointestinal distress can improve attention, learning and related behaviours.

 

Q: What are the chances that our next child will have ASD?

Most cases of ASD can be accounted for genetically. If there is one child with ASD in the family, the risk of having another child with ASD is much higher than in the general population. So far though, there is no reliable test to detect ASD in the foetus.

 

Q: Are all children with ASD alike?

Children and adults with ASD are different and unique like other people. They often care deeply but lack the ability to spontaneously develop empathic and socially connected typical behaviour. They often want to socially interact but lack the ability to develop effective social interaction skills spontaneously.

 

Q: Do children and adults with ASD not interact with others at all?

Children and adults with ASD may interact with others. They can have good eye contact and can be verbal too. They can be very bright, of average intelligence or have cognitive deficits.

 

Q: Does ASD get worse with age?

ASD is not degenerative. Children and adults with ASD can continuously improve; they are most likely to improve with specialized, individualized services and opportunities for supported inclusion. If they do not improve, changes need to be made to the services that the child is receiving.

 

Q: How is ASD different from ADHD?

Although research of this common clinical co-occurrence is limited, Attention Deficit Hyperactivity Disorder is sometimes confused with ASD. Children with ADHD may have difficulty concentrating and other kids may not want to play with them. However, this is usually because they do not want to be associated with someone who is likely to be naughty, and not because of their social skills.

ADHD is a separate condition, but it can occur with ASD.

Acknowledgement and References

We would like to extend our sincere gratitude to Ms. Mrinalinee Rana and Ms. Viveka Chattopadhyay who reviewed this content and whose suggestions and guidance proved immensely valuable.

The following references were used to compile the above information:

[1] http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf

[2] http://www.nhs.uk/conditions/autistic-spectrum-disorder/pages/causes.aspx

[3] http://www.nhs.uk/conditions/autistic-spectrum-disorder/pages/causes.aspx

[4] https://www.clinicalkey.com/topics/pediatrics/Down’s-syndrome.html

[5] http://www.tacanow.org/family-resources/pecs/