Autism is a lifelong disability that restricts people from communicating or relating to others properly. Their brain lacks certain developments so they have a hard time making sense of the world and everything around them.

Autism is an “invisible” disability – you won’t know something is wrong by looking at them (unless they have other associated physical disabilities). No specific cause has yet been discovered, but it is assumed that there may be a genetic link. Autism may be associated with a variety of conditions affecting brain development that occur before, during or very soon after birth.

Autism is a neurodevelopmental disorder. Development of certain areas of the brain may suddenly stop, thus hampering proper development of other important areas of the brain, e.g. speech, academic skills, general understanding, etc.

Autism is not a mental illness – people with mental illnesses have very low skill development, but it is even in all areas. People with autism show uneven skill development with deficits in certain areas, but in other areas there may be normal or exceptional development.

Autism does not occur as result of poor parenting, emotional problems or emotional deprivation. Family income, life style and educational levels probably do not affect the chance of autism’s occurrence.

The onset of autism is almost always before the age of three years. The worldwide statistics show that the risk is four to five times greater for boys than girls. Scientists have yet to explain this disparity.

Autistic people cannot process information and sensations properly, hence most cannot communicate their wants, thoughts or feelings effectively. They find it difficult to interact and even when they do, it may appear awkward or inappropriate to others. Certain sensations, e.g. hearing, touch smell or light maybe difficult to tolerate. This is why autistic people get easily frustrated, and this leads to several behavioural problems.

Simple activities, e.g. feeding, dressing, going to the bathroom, etc, are difficult to them because of sensory problems and these also take a long time to master. Hyperactivity, short attention span, poor eye contact, make it difficult for the child to learn.

People with autism have the ‘triad of impairments’.

1. Social interaction – They have a low emotional level and rarely get emotionally attached to any one. They appear not to ‘care’ about anyone. They are always wrapped up in their own world.

2. Social communication – They cannot express themselves or their feelings properly, or they don’t know the proper way to do so. They take things literally (cannot understand metaphors, gestures, read expressions or in between the lines, detect sarcasm; they cannot tell what others may be thinking or trying to imply).

3. Imagination – They posses absolutely none or hardly any imagination; they hardly or never take part in creative activities. They posses no abstract thinking.

The main characteristic features of autism are:

• Impairments in verbal and non-verbal communication
• Impairments in social interactions with parents, siblings and others
• Restrictive and repetitive patterns of behaviour or interests

Autistic children may also exhibit:

• Attention problems
• Repeated body movement (hand flapping, rocking, etc)
• Unusual attachment to objects
• Resistance to any change in routine
• Apparent insensitivity to physical dangers and pain
• Impairments in imaginative and social play
• Disruptive, aggressive or self injurious behaviour (tantrums, streaking, biting, etc)
• Lack of eye contact
• Unresponsiveness to people
• Lack of attention to people
• Lack of behaviour according to social norms
• Attention to the non-social aspects of people
• Lack of awareness of the feelings of others
• Flat facial and vocal tone
• Echolalia – copying words like a parrot
• Sleep disturbances
• Inappropriate laughing and giggling

• Treatment of parts of people as detached objects or treatment of people as if they were inanimate objects.

Autism is a Spectrum Disorder, which means that the condition has wide ranging degrees of severity. The developmental rate of each autistic child is different. In more severe cases, the child usually gets mentally retarded. In less severe cases, the child may be high functioning, even possessing normal or very high IQ. Their verbal communication is good, and they can sufficiently express their needs and feelings. These children are usually sent to mainstream schools if their learning capability is good enough. However, as they grow older, it becomes difficult for them to cope with the increasing academic and social pressures. Their behaviour is often unacceptable and they cannot make friends.

Some autistic people are known to have exceptional talent normally not seen in most people. Some have amazing memorising abilities (e.g. memorising a hundred years’ calendars); some can draw extremely accurately; some can play a tune on instruments having heard it only once; some can imitate noises of vehicles or machines. However these do not show creativity because these children can only copy and reproduce, never create.

CARE FOR AUTISTIC CHILDREN

There is no miraculous cure for autism. Autistic children can be made more functional and can be brought towards normality by proper training, behaviour management and education programmes, starting from the very beginning of their lives – when the problems have just begun to appear. If this intervention is delayed, the child’s case will become more severe and s/he will eventually appear to be mentally retarded. He or she will become less functional and a burden to the society.

First of all, a proper neurodevelopmental assessment and diagnosis is required. Once the diagnosis is established, the child needs a timely intervention. The child requires a special education programme. But the parents must first fully accept that their child is autistic, and not keep hoping for a miraculous cure. They should not hide the child from society or be afraid of getting “exposed” as the parents of an autistic child.

There are special schools providing the correct type of training and education for these children. They also give practical guidelines to help the parents handle their child and to help the child to reach full potential. They will assess the child continuously and produce follow-up reports of their progress. These schools also help to build up a parent support group where parents can share their experiences. But at the same time, the parents cannot expect the school to do everything for them. They have to work with the child and give him/her enough attention at home. They will have to work on how to become a parent therapist and create an optimal learning environment for the child at home.

The most important ability required to handle an autistic child is patience. To make these children independent (as in taking care of themselves and carry out the daily living activities) is not easy and requires continuous training and supervision. Those who cannot talk are taught to communicate with flashcards or sign language. Speech therapies, communication skills development and behaviour management help them to be more functional.

SOCIAL STRAINS ON THESE FAMILIES

Family members of autistic children have to put in a lot of effort into raising the autistic child. When there is an autistic child in the family, the family members have to go through a lot of mental and physical strain.

Since autism is an invisible disability, it is impossible to determine whether a child is suffering from autism before two years of age. Thus, it becomes extremely difficult for the parents to accept that their child is autistic, when these problems become clear. It is extremely painful for them to see that the child, who had been developing normally for two years or so, gradually losing meaningful speech and communication skills. When they try to enrol these children in mainstream schools, they find that the child is not accepted due to his/her unexplained restlessness and deviant communication patterns.

According to surveys, this has lead to major depressions, mostly in case of mothers. Domestic problems also occur, when some working mothers have to let go of their jobs, to give the child more time. Their self-esteem is greatly reduced as they try to compare their child with other children and feel a deep remorse about why they have been endowed with this “curse”.

It is normal for some people with autism to display “challenging behaviour” and become extremely problematic for the family members, as well as those outside the family. Parents face difficulties in taking the child out of the house, as other people of the society, sometimes even relatives, show annoyance and disagreement, as they cannot accept the child. This causes the parents to become more and more secluded form society, as they start to avoid social circles, for the sake of their autistic child.

Autism in the family not only affects the parents, but sibling as well. Parents sometimes tend to vent their frustrations on the other normal child, spend more time with the autistic child, all of which can lead to severe depression of the normal child.

These families need to overcome their depressions by going for proper counselling sessions from professionals who are experienced in this field. They need to stand strong because of they remain depressed; it will only harm the child even more. If they don’t delay their acceptance and begin an early intervention, then the child can be made to overcome the problems significantly.

When an autistic child grows older, in some ways, the strain becomes greater because abnormal behaviour from older children is less socially acceptable than from younger ones. As autistic children step into adolescence, they also face the physical and emotional changes and challenges. It is also during this time they start to realize how different they are from other children and some of them may go into depression. For some people with autism, deterioration occurs during puberty. It is during this transition period, that the strengthening of the lateral support system (home, family, school and environment) is required. Most of them transit into adulthood with much difficulty. Proper training must still be carried on and these adults should always be under supervision.

AUTISM IN BANGLADESH

All over the world, autism is increasing at an alarming rate. In a recent survey in Canada, it has been seen that one in 500 cases are suspected to have autism, making it more common than Down’s syndrome or other childhood disabilities.

The situation in Bangladesh is not clear yet. The correct statistics are not known because a proper epidemiological survey has not yet been carried out. Parents tend to hide their autistic children and do not bring them out to society. Many of them don’t even know what autism is, especially in the rural areas. Autism is a fairly recent discovery in Bangladesh. It has been diagnosed since 2001-2002. Child development physicians are working on it and it is supposed that statistics here will be similar to that of the rest of the world.

Organisations like Child Development Centre (CDC) in Dhaka Shishu Hospital and its network throughout Bangladesh are carrying out the developmental assessments and diagnosis of these children.

Organisations providing education for these children are:

• Autism Welfare Foundation (AWF)
• Bangladesh Protibondhi Foundation (BPF)
• Society for the Welfare of Autistic Children (SWAC)
• Society for the Welfare of the Intellectually Disabled (SWID Bangladesh)
• School for Gifted Children
• Beautiful Mind
• Caring Glory

The main problem is that the provisions for special education programmes are only available in Dhaka at present. These schools need to be opened outside Dhaka. Homes need to be opened for adult autistics, where they can live under supervision, and where they will have jobs. They can be taught to work at handicrafts and the like, because they are good with repetitive tasks.

Running these organisations is not an easy job, but they have crossed many hurdles and there are still hurdles yet to come. We can hope they will succeed in carrying on their work, because these organisations are extremely dedicated to their work, mainly because a lot of them are run by parents of autistic children.

In mainstream schools, an intensive training programme has to be run, so that the teachers can support those autistic children with greater learning capabilities and milder behavioural problems.

The Ministry of Social Welfare, Ministry of Health and Family Welfare, and Ministry of Primary and Mass Education should extend cooperation to them. Attention of foreign donors may be invited to this field.

Most of all, we need to raise awareness. We need to learn about autism and accept these people as part of the society. We have to learn how to behave with and handle autistics, so we can all make the confusing journey of life easier for them.

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Submitted By :
Tushmit Mehruba Hasan
Amreen Rahman