There is nothing as heart breaking as having a special needs child. The unfairness of it all, the great deposits of patience and fortitude that the parents and the siblings need, combined with the suffering associated with watching a loved one’s struggles can make life unbearably bitter. However all is not lost – there are literally hundreds of organizations and support groups out there ready to help with everything from information to finances. While help of all kinds is welcome, what most parents need is information – an idea of what it is they are dealing with and the best ways of coping.
This month’s issue takes a look at Autism – what it is and a few online resources for you to tap.
What is Autism?
- Autism is a development disorder, which causes people to live in their own world cut off from reality, as most of us know it. People with autism have difficulties in communication, social behaviour and perception of the world we live in.
- Autism is present at birth and the characteristics become evident in the first three years.
The symptoms of autism appear in the first 36 months and are –
- Relating – The child with autism often has extreme difficulties in relating to other people. The child will often avoid such basic communication as eye contact and is frequently described as being in a world of their own. Attempts to break into their world can provoke frustration and may lead to tantrums. The child with autism often resists being held and is generally indifferent to the social approaches of others. It is not unusual for the child with autism to treat other people as inanimate objects or as tools for their use (eg using someone’s hand to open a door).
- Restricted activities or interests – There is a lack of normal play development. Most children with autism have no imaginative play and the few who do, tend to repeat the same theme and rarely extend their games. When left to themselves, children with autism spend much of their time in repetitive and apparently pointless activities which absorb them to the exclusion of all else. Typical activities include rubbing surfaces, toe walking, flicking string, odd hand movements, smelling things or spinning. Children with autism strongly resist attempts to redirect them from these activities.
- Perception – People with autism seem to have difficulty in making sense of their environment. This may account, in part, for the obsessive nature of their behaviour. They are reducing the world to those parts, which they can understand and with which they feel safe. These reactions can vary from day to day. Often a child who will not respond to his name or a loud noise, will become distressed by a seemingly normal or sudden sound. Children with autism also have unusual responses to touch, pain and the temperature. They may either under or over react to these sensations
- Communication – The lack of response by an autistic child sometimes raises the suspicion that the child is deaf. People with autism do not communicate easily; some do not speak at all. Others simply echo back what is said to them (echolalia), while others use language in an odd and limited manner. Another speech characteristic is pronoun reversal where the child will say ” You want a drink” instead of “I want a drink”. Rhythm, tone and pace of speech can be affected with the resulting speech sounding odd. The person with autism may use language mainly to name objects and has little understanding of conversation. There are also difficulties in understanding other people’s communication and in the ability to comprehend other people’s thoughts and feelings. This lack of awareness is sometimes called theory of mind or mind-blindness.
There are many theories about what causes autism but little or no concrete evidence for any single theory. Autism is widely believed to be a biological result of brain abnormality caused by a combination of factors such as genetics, viral infections and/or complications during pregnancy. Autism is also sometimes associated with other disorders such as epilepsy.
Presently there is no known cure for autism but early diagnosis and a structured education and behaviour development program can make the life of the autistic child and his parents more meaningful and fulfilling. In addition, there are numerous therapies in the field of alternative medicine such as music therapy and various relaxation therapies that have been found effective in a few cases in reducing the symptoms.
Autism was made famous by the well known movie The Rainmaker(?). While it is true that some autists display startling mental powers in fields such as music, maths, drawing and memory, it is also a fact that such abilities are found only in a small percentage of autists. Autistic children will always need long term care and financial support as work options are limited particularly in the Indian context.
Support & Help
For online help with autism you can try the following websites –
o http: //www.autism-india.org
Coping with Autism
Alright now that we’ve got the technical part out of the way – lets look at the human part. As we said in the beginning special needs disorders are the very stuff of parental nightmares. But even in this horror land, autism holds a special place because your child while recognizing you can seem to be quite unattached and may have difficulty in returning affection and maintaining social relationships. It is therefore doubly hard on family members to struggle to take care of and remain patient with someone who doesn’t seem to care for you at all. While no one who has himself not undergone this pain can even come close to understanding there are a few strategies that may help you to cope
- Find friends in similar circumstances – there’s nothing like being able to share your pain with someone who truly understands!
- Accept any kind of help – don’t feel guilty about accepting help from family and friends and perhaps even strangers. Accepting help does not diminish you or turn you into a weak person.
- Don’t hesitate to seek professional psychiatric help – coping with a disabled child puts tremendous pressure on you emotionally and psychologically. There’s nothing wrong with getting some supports to bolster these reserves and help you accept what has happened.
- Try meditating or yoga or pranic healing etc- the aim is to strengthen yourself in everyway so as to provide the kind of rocklike support your family needs. Whatever means help you in coming to terms with yourself and with finding peace of mind are valid.
- Don’t overemphasize the disability – yes, your child is autistic. No amount of grieving can change this fact but it can help make your life more difficult. Too much attention on the autistic child will prevent you from giving your other children the help and attention they too need from you. It may also cause them to feel resentful of their sibling. Ease the strain on the whole family with acceptance of what has happened, don’t trivialize it but don’t turn it into something bigger than what it is. Tragedies are common and almost everyone you know will have their share of sorrows and pain – yours is just another one amongst many.
If you feel the need to know more about autism please feel free to write in to ourspecial needs expert.