Building knowledge about autism, and building a school, one step at a time – The Step by Step Foundation, Guyana

By Dr Kala Ramnath and Dr Suraiya Ismail

Dr Suraiya Ismail, Chair of the Step by Step Foundation’s Executive Committee, is a public health nutritionist and educator, with extensive international experience working in key academic institutions and international agencies.  Her introduction to autism was recent and arose out of her efforts to find assistance in Guyana for the mother of a child with autism.

Dr Kala Ramnath is mum to Rohan, now aged 13, who inspired her, alongside Dr Suraiya Ismail, Dr Jim Ellis (then Rohan’s autism consultant) and Mrs. Deborah Seebaran, a Guyanese company director to help set up Step by Step Guyana in 2011. Kala is also a Caribbean disability and inclusion policy consultant who has published and presented papers and written articles on Autism policy in the Caribbean and the work of Step by Step Guyana.

Caribbean parents of children with special needs in 2017 continue to be not exactly spoilt for choice when it comes to accessing health, education and social services. Diagnoses remain notoriously difficult to access for the poor, because of lack of trained primary care personnel, and patchy even where those services are available. Appropriate schooling ranges from limited to extremely limited and archaic where they do exist. In many cases, it continues to be left up to non-governmental organisations and committed individuals to provide education and therapeutic services for these most vulnerable of our citizens in the Region.

It’s hard to doubt the sincerity of the organizations that do help children and young people with autism. Born as they are out of frustration at the continued lack of services and policy attention from the State, they however tend to run free – ad-hoc in terms of approach, and oversight-deficient. They remain free of any official monitoring largely because governments tend to be at best under-informed about contemporary mental health-related special needs ‘thinking’ and praxis, in spite of the usual expressed official broad commitment to ‘special needs’. A few ‘schools’ and ‘centres’ do offer some reasonable to good services, training children in literacy, numeracy and skills development and self-care. Many however just appear to provide what is effectively day care services, with no set format for teaching those under their charge.

At worst, some schools    exist, again free of any official oversight, but these are extremely expensive and, not surprisingly perhaps, quite lucrative for the owners, even where they are registered as charities and NGOs, preying on the vulnerability of parents who can afford them. Again however, their offerings can range from some measure of structured teaching, but with no discernible or individualised teaching objectives for the child.

Parents seem relieved that they have somewhere to send their child but can become trapped in a system where they feel compelled to spend a lot of money, but with no interest of the state in their child’s potential for self-sufficiency and independence.

When it comes to how the State approaches disability in general and autism in particular, the history has been patchy precisely because of the confusion of approaches to the condition. Two trends have emerged: the traditional clinical approach which still has a lot of official support, ie, that autism is just another mental disorder that can be medically treated. In the last decade or two however, a new approach has gained ground. Neurodiversity seeks to cast autism essentially as another kind of ‘normal’ that should be respected and the rights of the autistic ensured, just like any other minority group. In other words, they are not ill, but just a group of people in any society who see the world differently and whose rights should be protected, including services like education and freedom to achieve their fullest potential.

The early history of autism research and teaching largely focussed on the medical/clinical side and has always been controversial, because so little had been known about it. Many claimed expertise and still continue to do so based on scant evidence.

Occupational Therapy with Jen Stornelli.

The main debate at the moment in the field of autism is about the rights of neurodiverse people, which includes those with autism. Essentially, neurodiversity is a recognition that there are different kinds of normal, and autism is just one of many cognitive interpretations/realizations of normality. Therefore, these citizens exist and their rights ought to be protected and their needs supported by the State versus the need to ‘cure’ them, which is not only painful and cruel, but potentially harmful. Even organisations in the US like Autism Speaks, which support medical research to further clinical knowledge, implicitly and explicitly acknowledge that behavioural-based teaching combined with speech and language therapy, augmented with occupational therapy is the best way to help these kids reach their potential, even as they seek to increase our awareness about the condition. Not surprisingly perhaps, the neurodiversity adherents see the whole language of autism skewed towards the curative, and find words like ‘disorder’ and ‘medical’ distressing and threatening to their rights as individuals and as a collective of human beings who have long been discriminated against and stigmatised.

The debate rages on, but in the interim, we know that a behavioural-based learning approach which combines applied behaviour analysis with other proven therapies like speech and language therapy and occupational therapy has proved most effective. This combination/mixed approach is widely used and has been at the leading edge of education/social psychological research into the best way to help individuals with autism to achieve their fullest potential.

Our Step by Step School and Foundation

The Step by Step Foundation was registered in Guyana as a charity in August 2011.  A month later, the Foundation opened its school in Bagotstown with just five children and three tutors.  The mission of the school is to enable children with autism to achieve their maximum potential by providing quality educational opportunities. The School uses the individualised-based Applied Behavioural Analysis (ABA) approach at its core, alongside a mix of occupational and speech therapy to improve the communication, social and behavioural skills of children with autism targeted to the needs of each child, ideally with 1:1 targeted teaching and learning at its core.

Five  and a half years later, Step by Step School has grown to eighteen (18) children (all diagnosed with moderate or severe autism), seven tutors, an administrator and support staff.  We benefit from the invaluable guidance and commitment of three US-based consultants, one of whom, Dr Jim Ellis, a board certified behaviour analyst and clinical psychologist, is a co-founder.  ABA at Step by Step uses one-on-one teaching and small group work. Each child has an individualised programme which allows them to develop at their own pace. Because of this, each teacher is assigned a maximum of only two to three children.

Our teachers have all been trained by Dr Ellis and have extensive experience. Dr Ellis is currently working on training them to be certified Behaviour Technicians. We also enjoy the services of two more US-based consultants: Dr Kerry Davis, a speech language pathologist, and Ms Jen Stornelli, an occupational therapist. All consultants visit the School regularly and monitor progress through weekly Skype sessions.

We encourage parental involvement; the ABA method works best if parents continue to use it at home. We welcome parent volunteers; mothers or fathers can spend as much time as they wish at the school, learning how to help their child develop fully, and participating in the school’s activities. Children with autism will make the greatest progress if exposed to the ABA approach as early as possible.

ABA can be started as early as age 3, or even earlier. The School accepts children aged 3 to 12 years. If a parent wishes to register a child at The Step by Step School:

Ø The Senior Tutor conducts a preliminary assessment

Ø A full diagnosis will be carried out by Dr Ellis on his next visit to Guyana

Ø If the child is diagnosed as autistic, s/he will be placed on our waitlist, and admitted when space is available.

Autism (or Autism Spectrum Disorders) is a complex developmental disability that typically appears during the first three years of life. Children display repetitive behaviours, difficulties in verbal and non-verbal communication, social interaction and play activities.

Autism affects children’s development in three broad areas:

Ø Communication skills

Ø Social skills

Ø Inappropriate behaviours

Diagnosing Autism

Parents may have noticed that their child is not developing as quickly as other children. Or the doctor may give a preliminary diagnosis of autism. To get a full diagnosis, a psychologist or health professional with experience in autism is needed.

The need for a new school and partnering with the Government of Guyana

The Step by Step School has been supported entirely by donations from the private sector and individuals. The generosity of our donors has enabled us to maintain a low pupil to teacher ratio (3:1), thereby enabling individualized programmes and maximum impact.  However, we have now reached the limit of our capacity in the School’s present site, and there are more than forty children on our waiting list seeking admission.  We need a bigger school. Parents are encouraged to donate whatever they can afford, but we charge no fees and our policy is that no child will ever be refused for financial reasons.

Three exciting events have occurred since early 2016:

Her Excellency, Sandra M. Granger, the First Lady of the Cooperative Republic of Guyana, agreed to become our Patron, and support our efforts to meet the educational needs of children with autism.

The Ministry of Education has given us land to enable us to build a bigger school with a better range of facilities.  The land is situated on the campus of the Cyril Potter College of Education.

The Ministry of Education has also agreed to meet our need for teachers as we admit more children.  The School and its consultants will train the teachers in methods for autism education.  These teachers can later be deployed in schools elsewhere in Guyana, eventually ensuring that all children with autism can access a quality education tailored to their needs.

Building the new school

Mr Kenrick Thomas, architect, has generously given his time and expertise to develop and cost a site plan for the new school which will accommodate 50-60 children and provide a range of other facilities, including an outdoor play area which we currently lack.  The site will also include basic facilities for occupational training.

CONTACT US

To discuss how you can help, please contact us on 222 2633 (Dr Suraiya Ismail, Chair of Foundation) or 231 4172 (Mrs Deborah Seebarran, Deputy Chair).  Donations can be made:

By cheque to The Step by Step Foundation-Building Funds, delivered to The Step by Step Foundation, 13 Bel Air Gardens, Georgetown.

Or by transfer to our account at the Republic Bank Ltd, 38-40 Water Street, Georgetown.

Account name:  The Step by Step Foundation-Building Funds;   Account #:  266-761-1;  Swiftcode:  RBGLGYGG

To learn more about us, visit our website (www.stepbystepguyana.org) and facebook page.

 

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