by Thaao Dill
Being from and in Bermuda is a gift – our people, this place and how both interact with one another leads to the kind of life millions of folks from around the world are willing to save for months to experience for days.
However, our island’s gifts do not exempt us from being saddled with the type of distinct, lasting challenges that our population must confront and overcome to maximize opportunity, equality, and freedom for all. Autism and its impact on children and the families that need and love them is one of those challenges. Based on the experience and guidance shared with this writer by two Bermudian parents of Bermudian children with autism, this challenge is one that requires more work, effort, and resources for and from us all to do better by this uniquely vulnerable group.
According to Autism Speaks, one of the world’s leading autism advocacy and support organizations, autism spectrum disorder (ASD) describes a wide range of conditions that can be largely characterized as difficulties with managing speech and nonverbal communication, social skills, and repetitive behaviours. The American Center for Disease Control estimates that autism impacts around every fiftieth child in the US, numbers that local experts believe are broadly replicated here in Bermuda.
Ordinarily, indications of autism appear between the age of 2 or 3 but some developmental delays can appear as early as 18 months – the good news is that the earlier autism is identified, the earlier intervention can occur which increases the likelihood of positive outcomes later in life.
However, this is where the lived experience of two local parents of children with autism – both uniquely equipped to make particularly well informed, useful observations – makes it plain that there’s much work to be done before those improved outcomes will be more universally available in Bermuda.
As the former president of BASE (Bermuda Autism Support and Education) and a father of a child with autism, Anthony Peets is deeply familiar with the range of services and support available to the families in Bermuda who have been directly impacted by ASD. Mr Peets shared that the two main Early Intervention support services on island [BASE and Tomorrow’s Voices] provide essential help but accessing it can be cost prohibitive for families without the financial resources to meet the existing fee structure. State support, according to Mr Peets is “stretched, and not as extensive when it comes to the many hours of early intervention typically required and the variety of therapeutic modalities offered.”
Additionally, on-island diagnosis can take years which leads many parents to seek medical intervention and guidance overseas if their insurance covers it. Additional support services like speech, occupational therapy and one-on-one engagement are expensive, particularly when coupled with the hundreds of recommended hours of best practice intervention. Consequently, as Mr Peets puts it, “parents do what they can”.
Shelita Jones is one parent who has done what she can. She and her husband Dwight moved their family to the United Kingdom to ensure that her eldest son would receive careful, comprehensive support for his ASD while in school – a non-negotiable priority that was painfully underlined by their experience in the system here in Bermuda. Mrs Jones told me that there is a “devastating lack of understanding regarding autism.” This was demonstrated throughout her son’s entire formal educational experience, from nursery through the completion of primary school. She said that his challenges were distinct and noticeable from the beginning, but his behavioural issues were presented to her as the result of parenting flaws – that he was simultaneously spoiled and neglected, sufficiently so to justify having Social Services sent to their home to investigate.
Mrs Jones shared that his diagnosis at seven and her son being moved to the island’s first in-school autism program helped immeasurably, principally due to the empathy and care demonstrated by the teachers and staff (which included, co-incidentally, Mr Peets as school counsellor). However, the extreme isolation and frustration she felt during his youngest years were impossible to shake loose.
“No one was willing to help, and I spent most of that time trying to hide my struggles in the fear of being judged. I was left to trust my gut and instinct when it came to raising him,” she revealed.
As a result of her experiences, Mrs Jones was left unable to believe that any school in Bermuda – public or private – could meet her son’s needs and relocated to the UK. Since that transition, he has graduated high school, enrolled in college pursuing a post-secondary music qualification and, in a word, thrived.
Both Mr Peets and Mrs Jones have identified that parental engagement, commitment, and advocacy are key to ensuring that children with autism are holistically cared for. Mr Peets shared that “a major area of impact is to ENSURE that the LEAST RESTRICTIVE learning environment is engaged when children on the spectrum become of tertiary school age. Engaging with typically developing peers is major for our kids on the spectrum and early education and fostering the embrace of typical peers is so helpful.”
There’s much more that Bermuda can do to provide resources and support for children with autism and their families – the cost of intervention can be staggering, with millions of dollars required from diagnosis to adulthood. However, as Mr Peets made clear, some of the most impactful changes are entirely determined by each of us as individuals. “It is imperative, as you will not live forever, to decide what it is that is important for your kid’s survival. Focus on strengths, focus on the things you feel are just imperative, let no ONE tell you that things are not possible.”
Mrs Jones is just as explicit, saying “Stop name-calling these children and mislabelling them as rude, hard to deal with, or weird. A piece of paper changes nothing if you do nothing for the challenges. So, if the solution is not a piece of paper but some type of intervention, then do that. Intervene!”
This is a challenge that we can overcome, if we choose to ensure that Bermuda’s gifts are available to everyone from this place – particularly those with ASD.