Opinion: Autism: the great unknown

POSTED: 07/13/14 9:34 PM

Dear editor,

I feel the need to react to the article you published yesterday on page 4 of your newspaper under the headline Autism – the great unknown.

My experience after 1.5 year working with two  groups of children with challenges in an elementary school on St Maarten is the following:

6 out of 18 of my children are on the spectrum, of which:

1 was diagnosed with ADD/ADHD (attention deficit/attention deficit with hyperactivity)

1 was diagnosed with a low IQ but nothing was said about ADD/ADHD

1 was just diagnosed about 3 months ago while we recognized all the signs when we started working with that particular child in January 2013.

None of the parents knew what the matter was with their child, and none knew the meaning of living with ADD/ADHD, let alone about being on the spectrum. The school will inform the parents about the results of the tests but they won’t tell them what to do about it because they too lack accurate information on the subject. As to the teachers, they have no clue either. And let’s be fair: they are paid to teach the children they are not psychologists or specialized in Autism spectrum.

On St Maarten as far as I know there is 1 (one) organization that deals with children on the autism spectrum, with whatever simple means at their disposal.

600,000 children with autism in France, 1 out of 54 born on the autism spectrum in the US, one out of 38 in Korea just to mention a few figures. Although the US is better equipped to cope with this phenomenon, France is doing very little to accommodate not only adults but also this new generation of children with challenges. The point is that it seems that the world was taken by surprise by this turn of event so we shouldn’t blame our Caribbean countries too much for their lack of initiatives regarding this urgent matter. It remains a fact thought that our islands are ill-informed about the matter and ill-equipped to deal with it despite the effort by some local NGO’s to bring this dilemma to the attention of our government.

Personally I’m doing what I feel is best: I involve the parents by visiting them and telling them about their child being on the spectrum; I give them a lot of information about the symptoms and behavior patterns, and give them simple tools to start supporting their child in the best way possible. One child’s parents had been told about his ADD/ADHD but when I spoke to them they had not understood what that meant nor the consequences involved.

I help them implement simple easy changes in their child’s life by focusing on the child’s diet, sports activities, time restriction on video games and computer, relaxation and sleep regularity. For the autistic children I speak about the signs of autism, then we talk about the challenges encountered by their child and we develop a ‘plan’ on how to proceed further: this might include special types of therapy or a simpler mentoring. Naturally this takes time but at least parents have some tools at their disposal they are able to implement. And I notice the positive changes in the child’s behavior once basic changes are implemented.

On top of specialized centers to cater for these awesome children I feel it would be beneficent to have a group of well-informed ‘scouts’ that would visit families and inform them about their child’s condition and give them simple tools to implement right away. Parents will have to be involved in supporting their child.

Then we should conduct information sessions with the teachers to help them recognize the signs, to understand what living on the spectrum means and to motivate the schools to implement some simple but vital changes for these children. It could be by creating a small quiet space where autistic children could withdraw when the need arises, allow for regular time-out for those with ADD/ADHD to allow them to run around and get rid of their overload of energy.

After all school is where the children spend a big part of their life therefore it seems logical to me that this is where we have to ensure that we cater for some of these very special children’s needs.

For more information on Autism Spectrum, feel free to contact me at (1) 721 553 11 92 or email me at powerfulyou@rocketmail.com

In love and light always,

Myriam Haar

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