According to the United Nations, one per cent of any population may be diagnosed on the autism spectrum. As Autism Month, April, comes to a close, the hope of people with the neurological disorder and their families is that they will be better understood and accepted in society.
Amoy Boodoo spoke with the Sunday Guardian about how she copes with a child diagnosed with autism and the many challenges she and her family have faced. She is the mother of Kendell, a teenager with level one Autism Spectrum Disorder (ASD) and is also the programme co-ordinator for the Autistic Society of T&T (ASTT).
According to the Centers for Disease Control (cdc.gov), ASD is a developmental disability that can cause significant social, communication and behavioural challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave and learn in ways that are different from most other people. The learning, thinking and problem-solving abilities of people with ASD can range from gifted to being severely challenged. Some people with ASD need a lot of help in their daily lives, others need less.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger's syndrome. These conditions are now all called ASD. (Diagnostic Statistical Manual-5) People diagnosed with level one autism require some support, people with level two require substantial support, and people with level three (most severe) require very substantial support.
It should be noted that people can move across the spectrum according to their brain development, access to early diagnosis, early intervention, and appropriate educational and therapeutic treatment.
Q: Tell us a bit about yourself.
A: I was born and raised in Arima, where I grew up in a large family of four brothers and three sisters. We would often refer to our noisy, fun-loving family as "Eight is Enough." My family later moved to Warrenville, Cunupia, where at the age of 26 years I got married to my best friend. I am a proud mother of two handsome young men Kendell (17 years) and Kennedy (15). I am a parent advocate, volunteer and programme co-ordinator at the Autistic Society of T&T.
The last 15 years of my life has been spent learning about ASD, working hard to support my elder son, Kendell, who has autism. Given that my own family struggles as one family and hearing the stories of so many others, I feel it's very important for me as a parent and member of ASTT to reach out and help people to try and understand Autism Spectrum Disorder and the challenges faced by parents daily.
As the parent of an autistic child, what is the most valuable piece of advice you would give to parents when they find out their child has autism?
Receiving a diagnosis of autism can be devastating to some parents but for others, it can be a relief to have a label for their child's symptoms. Many parents can be overwhelmed by fear and grief for the loss of the future they had hoped for their child. However, I would like to say to them don't give up hope. I would encourage them to learn more about ASD, especially become "experts in their child's autism" as each person is unique on the autism spectrum. The diagnosis is important because it can open up doors to services and help parents learn about treatment their child can benefit from. I would encourage them to join parent support groups, and talking to others may also help. Much of the information that will be helpful to them is in the hands, heads and hearts of other parents like themselves. They are the key teachers in their child's life and while we need the support of the educational systems and professionals to provide all of the services our child needs, it is also important to recognise what skills their child needs to learn so as to improve their overall quality of life. "You are your child's biggest advocate, be his/her voice."
When was the ASTT started?
After her son Kester was diagnosed (in Florida) at age seven with autism in 1988, Mrs (Teresina) Sieunarine, our president, wrote articles to the newspapers and spoke on radio. She shared information on autism and the trauma being experienced and asked other parents to meet at the Kiwani's Club at St Helena, where the Nalis library is now. About 15 families met and formed the NGO on May 31, 1990. Parents came from all over Trinidad and so this year, the Autistic Society will be commemorating 25 years as a parent support group and have to be recognised as achieving this without a government subvention (to date).
What is the mission of the ASTT?
To work with families to help individuals with autism to achieve their fullest potential through education, training and advocacy for affordable and appropriate services. We also encourage an autism-friendly environment.
What are the T&T stats related to autism?
We have read that autism is the fastest growing developmental disability in the USA.
Local statistics are not available. However, the UN recently stated that one per cent of every country has people with autism so we may have about 13,000-plus in T&T, but the ASTT only knows of at least 600 people with autism who are members of our organisation.
What do you think is the biggest challenge and, conversely, opportunity for the ASTT?
I think the biggest challenge facing ASTT is getting the Government to support as well as recognise the need for early diagnosis and screening, implementing early intervention programmes with trained teachers and aides, providing affordable therapies for the families. We would like to see the relevant authorities such as the Ministry of
Health, Ministry of Education and the Ministry of People and Social Development implement all the plans written in many policy documents.
On the other hand, parents and families need to become empowered so they can become stronger advocates and demand the services their children need so they can achieve their fullest potential.
What are the some of the misconceptions or misunderstandings about children with autism?
There are so many misconceptions about persons with autism but I will just list a few at the top of my head:
�2 Many persons or the relatives feel that autism is caused by bad parenting. This is not so
�2 A child must make eye contact in order to understand verbal communication from another person. For some children, looking away from a voice often results in better communication.
�2 All persons with autism prefer to spend their time alone. While I agree this may be so sometimes, but people with autism may want to interact socially but may not naturally have the necessary social skills. Some may also be fearful of typically developing persons
�2 A child will grow out of autism. It is a lifelong disorder, but early intervention and the right support at the right time can enhance a person with autism
�2 It is a mental condition/disease.
�2 People with autism are dangerous. While there are many individuals who may exhibit aggressive behaviours, those behaviours are almost caused by frustration, physical and/or sensory overload and similar issues. It is very rare for a person with autism to act violently out of malice.
�2 Stimming (repetitive behaviour like flapping or rocking) is undesirable and should be stopped. Repetitive behaviour like flapping or rocking can help some people with autism deal with chaotic environments or stress, or it may be a form of personal expression and sometimes communication for people with autism
While these may be a few, there are many other misconceptions. I would like to encourage people to educate themselves about autism to dispel all the myths and learn the facts.
What do you wish someone had told you when you found out your son had autism?
First, I would like to say that Kendell was not officially diagnosed until age six when we had the opportunity to travel abroad in 2003. I learnt about autism after reading about it in a book I bought on the roadside in 1999 while on my way to work. His pediatrician at the time dispelled all notions and reassured me it was not autism and that he did not look autistic, he should be placed into a school so he could learn to conform by following other children. In 2000, ASTT was presenting a parent/teacher training workshop and my sister-in-law invited me along. I had the opportunity to learn more about autism, the challenges that lay ahead and strategies that will be useful
However, at that moment, I felt scared and depressed all at once about how the rest of our lives clearly was going to change. I questioned my inability to shield him forever from judgment, ridicule, and mean children and adults. As I sat in my seat sobbing inside I wished someone had held my hand at that moment and reassured me that everything was going to be OK, reassured me that getting the services that is needed will be easy to access and that my son will be fine.
What do you think T&T has to do to reach the level of North America and Europe when it comes to opportunities for people with disabilities and legislation protecting their rights?
T&T has not yet ratified the UN Convention on the rights of persons with disabilities. We need binding legislatives to be enacted or amend the existing laws and then move on to the difficult but not impossible task of enforcement. Once we put the necessary support mechanisms in place as they did, I believe we can also be successful in T&T. I feel the Government has the responsibility to be the forefront of increasing awareness which would lead to acceptance of persons with autism and other disabilities. There is an urgent need for our society to become a more caring one. A society that is willing to accept differences and diversity. Persons with autism can contribute to our society and indeed some businesses in the developed countries are now employing persons with autism especially in the IT field.
If someone only reads a couple lines of this interview what would you want them to know?
I really wished they would read the entire article however, I would like the readers to know you can either fight autism or embrace it. I have done both and fighting takes too much energy. I am sure everyone else has already repeatedly told them about the downsides, heartaches and the difficulties facing them on their journey with autism. Life doesn't have to be perfect to be amazing and my son is living proof of that.
Do you think fathers generally are fulfilling their roles as involved people in the support of their children with disabilities in T&T?
It can be very stressful for any person to walk this path alone and so many mothers have been doing it for such a long time. Joining support groups are not for mothers only! Over the years, I have seen an increase in fathers reaching out for support but I am sure it will make a tremendous difference if more fathers take an active role in sharing the responsibilities in raising a child with autism.
While the financial support is necessary, I also feel many fathers try to bury their emotions and may not know how to be supportive or how important it is to share the responsibilities of raising the child with any type of disabilities. My husband recently said in a TV interview that autism brings families closer and it certainly did in my family. Kendell's success came about with both of us working together as a team to give him the support he needs to face the many challenges ahead of him. I could not have done this alone! Let me rephrase that–I could if I had to but I am certainly glad I didn't.
How does the ASTT sustain its existence and does it engage in fund-raisers?
Our main funder for the last seven years has been Republic Bank's Power to Make a Difference Programme. We have been receiving Deeds of Covenants from some companies, donations from individuals and various groups. Proposal for funding have been sent to relevant ministries (no response yet). We sell T-shirts and pins throughout the year. We will be having our first family day/bazaar as a fund-raiser on Saturday, May 23, so we are asking persons to donate the following items towards our first event: food items (cans and bottles), toys, plants, books which we can use in our various booths. If persons wish to donate they can do so directly to any RBL acct #340 005 630 201.
When is your next event?
The RBL Autism Awareness Walk which will take place on April 25, at the Queen's Park Savannah. Our first family day/bazaar on Saturday, May 23, from 1 pm to 5 pm. Our monthly parent support group meeting on Saturday, May 30, at 2 pm�4.30 pm.
We are at present preparing for our Therapeutic Summer camp for children and adults with ASD in July.
What is the biggest need/priority of the Autistic Society and how can people, the public, help?
Any organisation's biggest need will be financial funding. At the moment, we rely heavily of RBL Power to make a Difference Programme. We would like to get a government subvention. Corporate organisations can donate by setting up Deeds of Covenant as part of their corporate social responsibility agenda (it is an incentive to receive tax breaks). Private persons can sponsor a child/adult for therapies and camp.
I think it is also important for members of our society to start viewing persons with any disability in a different way.
We need to remove the stigma associated with autism. Members of the public can get to know a family who has a child or adult with autism.
I also believe that persons in authority who have a child or grandchild with a disability should become advocates and not hide their child. It means that persons and families who have a child with a disability are still being stigmatised in T&T. I would encourage persons to visit Autism Place.
What other information about the ASTT would you like to share with our readers...contact info, social media etc?
ASTT extends services to adults and children with autism. We have adult recreational groups, social/play groups for children, one-to-one sessions with parents and child, functional life skills training. Weekly music and art therapy sessions. A day therapy camp for children and adults in summer vacation, sensory friendly movie nights, parent social counselling to parents and persons on the spectrum, monthly parent meetings and trainings. Persons wishing to get more information can contact the office 646-5506 or 228-5508, e-mail firstname.lastname@example.org. Persons can join our Facebook page and connect with us there also.
What is the most valuable piece of advice or information you would give to those who are living with autism or people close to those with autism?
This is and still is my personal mantra "when they are at their worst, you must always be at your best." A few years ago my sister said to me "you know, Amoy, we (meaning my family) all will help if something were to happen" to my husband and I, promising to help to take care of the boys, but they never had the opportunity to take care of Kendell for 24 hours without me being there and she wondered what it would be like and if they would have been able to manage with him. Over the years, I have always encouraged parents to help their children learn necessary functional life skills to be able to have some level of independence so they are not a "burden" for siblings or caregivers in the event they are not able to anymore.
I say this to my son all the time, that autism is just a word used by the doctors to categorise people who have certain difficulties in specific areas like the way they communicate, or how they behave, or how they socialise and make friends. I would say to him that all kids have challenges, it's just that people with autism the behaviours show up more. We let him know every day how proud we are of him for being such a good child. We love him, and having autism does not change the way we feel about him or who he is as a person..