UNDERSTANDING AUTISM



UNDERSTANDING AUTISM

By Leela Ramdeen, Chair of the Catholic Commission for Social Justice

On Saturday 22nd Nov. I delivered the feature address at the AGM of the Autistic Society of T&T (ASTT). While preparing my speech, I recalled supporting a family in London whose son, Jamie, was autistic. Initially, his parents were sure he was possessed by some evil spirit. As a toddler he looked normal, but he never smiled or responded to voices; stiffened when held and often cried for hours. He always played alone. He could not connect with the world around him. It took others and me quite a while to get them to seek medical help.

What made the diagnosis challenging for such parents, is that there is no standard treatment. Because autistic persons have such a wide range of symptoms, the treatment/programme that’s right for one person may not be right for another. Often there is a need for a multi-disciplinary team of professionals to diagnose autism.

In 1943 Dr Leo Kanner, a psychiatrist in the USA, coined the term ‘autism’ to describe a group of children who were extremely self-absorbed in a world of their own, emotionally and intellectually detached from other people, and showed severe social, communication, and behavioural problems.

Today, in many countries around the world autism is on the rise. In about 90% of the cases the cause is uncertain and so far there is no cure. It is estimated that in the USA there are 1.5m autistic persons. A recent report by Centers for Disease Control estimates that autism now affects as many as 1 in 150 children, making it the number one disability for children in the USA. Autism Spectrum Disorder is more common than childhood cancer, Diabetes, Downs syndrome, muscular dystrophy, and cystic fibrosis. A study released in 2001 by M.I.N.D. Institute, California, concluded that the increase is not due to better diagnosis, a broader diagnostic range, or migration patterns.

Autism has historically been a perplexing developmental disorder. It is not a mental illness but a neurological disorder which affects certain functions of the brain, particularly social interaction, communication and behaviour. It is four times more likely to affect males than females and can be found in families of all racial, ethnic and social backgrounds.

Most individuals with autism have apparently normal and even intelligent physical appearance. But it is usually a severely incapacitating, lifelong disability, resulting in a significant impairment of an individual’s ability to learn, develop healthy interactive behaviours, and understand verbal, nonverbal and reciprocal communication. Verbal language may be absent, or, if present, may be very limited in scope. Autism is often associated with cognitive deficits, including difficulty with abstract thinking.

However, autism does not affect all areas of functioning equally, and many individuals with autism have specific areas of significant weakness. Some autistic persons may excel in certain areas. For example Jamie could solve complex computational problems at 9 years old.

Examples of autistic behaviour include: abnormal automatic-like, repetitive and stereotype behaviour such as rocking, clapping, hand flapping, finger snapping, rocking, hand-biting, head banging self or head-butting others, difficulty in sleeping and eating, avoiding eye contact, insensitivity to pain, over sensitivity to touch or to sounds, hyper-activity or excessive passivity. Like many autistic persons, Jamie was terrified of new experiences and insisted on rigid routines. The slightest change upset him and provoked tantrums.

Although a large proportion of autistic persons are mentally challenged or have severe learning disabilities, it is estimated that about 10% of autistic persons have outstanding talents in music, art or ‘savant skills’ in mathematics. This includes the ability to multiply large numbers in the head within a short period of time; to determine the day of the week when given a specific date in history or memorise complete airline schedules. In the movie “The Rainman”, Dustin Hoffman played a very realistic and convincing part of such an autistic person.

Research studies carried out over the last 2 decades have brought us close towards understanding the nature and probable causes of autism. We also have a better understanding of the range and variability of the characteristics that encompass autism. Although there is no cure, research tells us that accurate early diagnosis, combined with intensive intervention/treatment, especially during the first 3 years of life, and appropriate education enable persons with autism to make tremendous progress.

Parents play a crucial role. Successful intervention rests on positive and close collaboration between parents and schools. The greater the consistency and continuity in the efforts of parents and schools, the greater is the likelihood of a successful outcome for the child.

Treatment of autism includes medications, and behavioural and psychological treatments. Therapeutic approaches range from approaches involving cognitive behaviour therapy and behaviour modification, to communication and sensory integration therapy.

Adults with autism can benefit from vocational training to provide them with the skills needed for obtaining jobs, in addition to social and recreational programmes. In the past almost 90% of autistic persons were institutionalised for life. Today there are autistic adults who graduate from University and receive degrees. Some develop relationships and marry. In the work environment, many autistic adults can be reliable and conscientious workers, even if some view them as being “different”.

Members of the Autistic Society of T&T (ASTT) have dedicated years of service to advocate for the rights, education and facilities for autistic persons. The challenge is to understand the spectrum of the disorder and find the best ways of providing support and meeting the wide range of learning needs among autistic persons.

The everyday challenges faced by persons on the autistic spectrum, and their families, in gaining appropriate support to meet their needs is great. Collaborative partnership between Government Ministries and NGOs e.g. ASTT, will enable us to harness the support of the community and enhance the quantity and quality of the resources/opportunities we can provide for persons with autism. We must explore methods that play to the strengths of persons with autism rather than constantly exposing their weaknesses.

Last year 150 children and young persons with autism registered with ASTT. 100 were being cared for at home. One child was in primary school, the others were in special schools or homes for ‘mentally retarded’ persons. ASTT estimates that for every one person with autism registered, there are 15 in T&T. The Government’s 2020 vision cannot be realised unless all our citizens, “are given equal opportunity for personal growth, self-expression and active participation in building our nation.”(ASTT)

The following are some of the needs identified by ASTT:

-                   Early screening and professional diagnosis of children with autism

using a multi-disciplinary team;

-                   Access to regular public awareness programmes in the electronic and

print media;

-         Access to educational opportunities, training and suitable jobs;

-         Research grants for autism in T&T;

-         Trained counsellors for parents of children with autism. Caregivers of children with autism                       are under tremendous stress and need support.

-                   Training for parents/care-givers/teachers: strategies to improve the

behavioural, communication, and social skills of autistic persons;

-                   Properly qualified personnel e.g. occupational, speech, music and

other therapists.

- Arrangements for respite care so that families can cope with the stress of caring for an autistic    

  child.

- Residential accommodation for adults with autism.

- Implementation of the Ministry of Social Development Policy Paper on Persons with Disabilities & the Ministry of Education's Policy Paper (The White Paper) Sections dealing with children with special educational needs pages 62 - 68.

- Appropriate structures in T&T to protect the rights of the child who has special educational needs   

   and their families.

-                   Financial assistance for on-going programmes. ASTT needs a

Centre for activities such as music therapy, therapeutic and functional life-skills programmes, educational activities, agricultural projects. ASTT needs a Centre with enough grounds so that there can be play facilities, agricultural projects for children and adults. A building to house resource materials, carry out training workshops, therapeutic and community-based functional life-skills programmes. An area to be used as an indoor leisure centre, including a swimming pool.

For more information or to assist ASTT please ring Teresina Sieunarine, President: 633 8397. Mailing address:

St. Helena Village, Via Caroni Post Office, Trinidad, W.I.

E-mail: autismtt@

In particular, ASTT is appealing for help in securing a place of their own to facilitate their important work. You can also be a volunteer to help increase public awareness and to raise funds for ASTT, or you can help financially by sponsoring a child in an educational/therapeutic programme (approx TT$160 per month). Annual subscription to ASTT is only TT$20 (about $3 US). General meetings of ASTT are held on the 4th Saturday each month.

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