Care to the Caregivers: Why Parent Support Is Vital in Helping Children with Autism
By South Asian Autism Awareness Centre
For families raising a child with developmental disabilities, like those with Autism Spectrum Disorder (ASD), the journey can be a challenging one.
According to leading Canadian ASD researcher Dr. Jonathan Weiss, the joys and responsibilities of parenting come with a “greater degree of stress, advocacy, care provision. And this lasts well beyond the time period expected – well into adulthood and often for the parents’ entire lives.”
No one prepares you for this, says Lakshmi Solomons, Case Manager at the SAAAC Autism Centre and a mother of a 23-year-old with autism. “No one is ever ready to raise a child with complex needs. And when you are not ready, you can become easily overwhelmed.
For Lakshmi, after her son was diagnosed with Autism Spectrum Disorder (ASD) at three years old, she and her husband felt completely lost. “We were new to Canada and did not know where to turn. Our son was also non-verbal, so he did not know how to communicate his needs or feelings and we did not understand what he wanted. This led to him having severe behavioural outbursts that we did not know how to handle. There were high levels of stress and anxiety between me and my husband. It was a tough time.”
Research has found that parent distress and experiences of negative life events increase the likelihood of mental health problems in children, as well as in parents. When these issues are not addressed, families face a downward spiral of increasing crises.
Increasingly, parent support programs are seen as vital to the treatment processes for ASD and other developmental disabilities. More provinces and states are recognizing that in order to help children with autism and other developmental disabilities grow and flourish, care must be provided to caregivers.
This year, as part of their new autism program, the province of Ontario is investing $530,000 over two years in programs aimed at supporting parents of children and youth with ASD. These programs include:
- Assessment, Development, Empowerment (ADE) – providing parents and caregivers with information to help them navigate autism-related services, build a strong network of support and learn basic behavioural and communication teaching strategies.
- SAAAC CARES Parental Mental Health Program – educating, empowering and supporting caregivers who require post-diagnosis emotional support and counselling as they build their knowledge.
“The price is too high when we don’t support these parents,” says Lakshmi. “We know distress among this group of caregivers is high, but if we can give them opportunities to be heard, to be empowered, to be supported, we can ultimately help them to continue their extraordinary work in raising children with complex needs.”
The SAAAC Autism Centre is a registered charity that supports culturally and linguistically diverse families living with Autism Spectrum Disorder. The centre provides a variety free and subsidized programs for children and caregivers. For more details visit www.saaac.org
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