by Dr. Shanthi Thomas
Raising a disabled child is challenging to say the least. Raising a child with Autism Spectrum Disorder (ASD) radically transforms the lives the parents and the other members of the family. Autism spectrum disorder (ASD) is a complex neurological and developmental disorder that begins in early childhood and lasts lifelong. It affects social interaction and communication significantly, and involves restricted and repetitive behaviour patterns, interests and activities. Let us have a look at the challenges involved in raising a child with Autism Spectrum Disorder.
Our society has not yet gained an understanding of autism and its manifestations. Often, even close family members and friends tend to blame the parents of the affected child or find fault with their parenting styles. This lack of understanding about what such parents go through makes it difficult for them to get support from friends and family. This lack of understanding on the part of society manifests mostly in school, if the autistic child is attending a mainstream school. When the autistic child behaves in a manner that is alarming to other kids, and disturbing to the class, both teachers and the parents of other children are likely to accuse the parents of not being strict disciplinarians, and advise them to take the kid out of school.
It is common for parents of children with ASD to feel guilty, anxious, angry, depressed, confused and overwhelmed. They also feel frustrated when the child does not respond to their best efforts. If they lose their temper because of their frustration, soon they feel guilty. They also feel guilty if they think it is their fault that the child has the illness. Disappointment, grief and a sense of sadness are also common. The biggest anxiety they feel however, is about the future of the affected child and who can provide care once they themselves are unable to do that.
It is also common for the parents of an autistic child to find it difficult to make their marriage work. Very often this is because of the sheer difficulty of looking after the child, and how it gives them little energy or leisure time to spend quality time with each other. In some cases, the partners blame each other for the child having the disorder. Typically mothers undergo more sacrifices than fathers, and this may give rise to bitterness. All of these negative emotions may embitter the relationship.
With advanced medical care facilities, there are ways in which autism can be managed, but it is not always easy to find the right fit of therapy for a child with the disorder. This is all the more difficult in developing and underdeveloped countries. Very often there is considerable delay in getting expert help, and in getting specialist treatment. In many countries, awareness about autism is low. In low and middle income countries, there is limited expertise and resources for diagnosis and treatment.
Children with Autism Spectrum Disorder need to be constantly attended to. This means that one of the parents or caregivers has to be constantly at home, giving up his/her career or whatever other pursuits they may have. They also may have to forego social occasions such as birthday parties and wedding receptions because it is impossible to leave the child behind alone or to take him along. Thus, raising a child with ASD places a strain on all facets of life of the parents.
A diagnosis of ASD for one of the children in the family places a huge financial burden on the parents. Standard autism management regimen can be very expensive. Some of the costs include Applied Behavior Analysis (ABA), speech and language therapy, specialized child care, other special interventions, and costly food or drug supplements. It does not help that one of the parents need to stay home with the child, unable to work and earn an income.
Siblings of an autistic child also go through several challenges. They may feel embarrassed in front of their peers and friends about having a sibling with a disorder, a ‘freak’. They may also have to adjust in several other ways, for example, not being able to celebrate a birthday party at home, or having to leave a social event earlier than necessary. They may also have to bend to their sick sibling’s wishes and needs. Very often, they may not receive the care and attention needed, because parents are too busy caring for their sibling with ASD.
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