[FEATURE ARTICLE] Her World: Living With The Spectrum

In the April 2018 issue of Her World magazine, our director, Jochebed Isaacs, shares some pointers for parents with children with autism, to ensure that they're in a positive place to provide the level of care that is required.

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Living With The Spectrum: What The Expert Says

Published in: Her World

Published on: April 2018

Written by: Eena Houzyama

At present, there is no known cause or cure for autism. What is likely, however, in individuals who are mildly affected is that with early and intensive intervention, they may catch up on their skill deficits. As a result of this, the symptoms may be present to a lesser degree. Individuals with autism often require some coaching for the long-term, specifically in the area of socialisation.

Autism is a spectrum disorder and affects individuals differently (regardless of their age). Generally, the most important thing is to get an early diagnosis in order to start intensive behavioural treatment as soon as possible. For individuals that are on the mild end of the spectrum and have the potential to learn rapidly, the focus will be on reducing the gap and transitioning successfully to school. For those that are more affected, it would be to increase functional skills, reduce inappropriate behaviour traits, and teach overall independence with a focus on vocational activities as well.

A child can be diagnosed from as young as 18 months old by a professional with at least a Masters qualification. A proper diagnostic evaluation should fulfil certain criteria. The first is the use and reference of the Diagnostic and Statistical Manual of Mental Disorders 5th Edition. Some diagnostic evaluations may use additional tools that are recognised as comprehensive screening tools. A proper diagnosis should include the clinician spending a good portion of time with the child directly, and also a thorough discussion to obtain an in-depth developmental history. The process can take anywhere between two to three hours per child.

Depending on the extended family dynamics, in some situations, it is beneficial to share about the diagnosis but otherwise, it can be counterproductive. Sharing resources (videos, movies, books, and website) on autism can help educate others.

As autism is a life-long journey, parents need to ensure that they're in a positive place to provide the level of care that is required. Here are some pointers:

  1. Go through the process of acceptance and grief.

It's every parent's hope to see their child grow up happy and healthy. Often, families may get caught up in taking the next step and not go through the grieving process. This can affect the individual parent's well-being as well as family dynamics. Feelings of guilt and blame can all come to play, which are toxic to developing healthy dynamics.

  1. Have time for each other and to be alone.

When a couple has a child with autism, he or she becomes the focus and takes up the bulk of the family's time. This is very natural, but time together as a couple and to be alone is vital as it allows parents to fulfil their own individual needs, which helps in giving the necessary care to your child. Arranging for a nanny or a relative to help for a few hours can be a welcome respite.

  1. Be involved together in your child's care.

Sometimes, cultural and gender roles can result in one partner being the primary caregiver. This often sparks feelings of resentment as well as frustration. Discussing as a couple how you would divide up the care-giving responsibilities can be an empowering process for both husband and wife.

  1. Allocate sufficient time for your other children.

It's common for siblings to feel resentment as they observe their parents give all the attention to the child with autism. Parents needs to be mindful that they, too, are children who need attention and affection. Include them positively in the process by setting aside quality time for them.