Thriving with autism: A family guide

 

Families raising a child with Autism Spectrum Disorder (ASD) have to face challenges virtually during every phase of his/her development. So, how can a family come together as a unit to care for and help a child with autism thrive:

It can be scary to learn that your child has or might have autism spectrum disorder (ASD). Parents are never ready to hear that their child is anything other than happy and healthy. But like any other circumstance in life, you can work with what you've been given by chalking out a plan. Far too many things go haywire when there is no plan. With Autistic Pride Day, (originally an Aspies for Freedom initiative), just around the corner, it is important to understand just how positivity and family support can bring about big changes in society.

Autism is a lifelong condition, not a life sentence!

Often, parents are told that ASD is an incurable, lifelong condition. It is worrying. But that doesn't mean that nothing you do will make a difference. Many people on the autism spectrum have spectacular neurodevelopmental assets. That potential needs to be harnessed.

The first thing that needs to be understood is that autism is not something to be "cured" Neither do kids grow out of autism. It comes under the spectrum of genetic neurodevelopmental disorders. So, ideally, if an autistic child receives intensive and sustained care over the years, they can potentially achieve self-reliance as an adult. According to experts, the earlier a child starts therapy, the better the outcome often is.

Reportedly, the best treatments are rooted in the science of applied behaviour analysis (ABA). They are mostly one-on-one, based on understanding behaviours and how they are affected by the environment.

Each case is unique

Autism symptoms can vary widely. Some children with ASD are less affected than others. Odd or incorrect behaviours, problems with communication, and repeated routines and rituals are all linked to ASD. It is a pervasive, multi-faceted disorder.

Organisations all around the world participate in pride celebration for autistic people, held on June 18 each year. The celebration is also designed to educate 'allistic' people - those not on the autism spectrum -that autistic people are unique individuals who should not be seen as cases for treatment. Similarly, all the family members - even close relatives and friends - need to be educated about the special needs of the child.

What are the challenges?

Potentially, having a child with autism can have an impact on various aspects of family life. Be it housekeeping, finances, the emotional and mental health of parents, marital relationships, or even physical health of family members. ASD can have a potential impact on the child and the functioning of the whole family.

Studies have shown that families with an autistic child often display poor sibling relationships, relationships with extended family, friends and neighbours and in recreation and leisure activities. It can create significant stress throughout the family, exhausting everyone emotionally and financially.

The family needs to acknowledge the emotional impact of autism. There is no single way to cope. Every family deals with stressful situations differently.

Don't hesitate to ask for help

You can't do everything yourself. Make friends with other parents who have children with autism. It is a wise idea for parents of an autistic child to join a support group. Meeting other families who understand your day to day challenges is important. It will help the child cope with the unique aspects of his or her disorder, and be crucial for parents' mental and physical well-being.

At times, it can feel pretty overwhelming. In such instances, parents need to be able to consult a therapist to help learn how to manage their feelings when faced with the challenges of raising a child with ASD. Parents can also seek support from the healthcare team that is treating their child.

It is important to pay special attention to the needs of other children in the family as well. Sometimes siblings' needs get lost when so much attention is needed by the child with ASD. In addition to spending one-to-one time with them, it is also a good idea to look for sibling support groups that can provide a safe place for them to talk and share their feelings and fears.

Celebrate small victories

Parents and family members should not fall into the trap of comparing their child's development with another. Learn to take pride in each small accomplishment. Children with autism can be brought up to achieve their personal best. As a family, you should celebrate even a small victory. Every child needs to feel loved for who he/she is rather than what he/she should be.

Encourage siblings to bond by doing some fun activities, even some chores. As a parent, you can find an activity or inspire them to figure out a way to connect with their brother or sister. It will foster and deepen their bond and be a special time to connect.

Take a break

When caring for an autistic child, parents often forget to assess their sources of strength, coping skills, or emotional attitudes. Parents should never be so busy meeting the needs of their child that they don't pause to relax, cry, or think.

If parents do not learn to care for their needs and take periodic breaks, chances are that they will be exhausted or stressed out. Reaching the breaking point is not only bad for the parents but for the whole family as a unit.

Guideline for other members

Other adult family members living with the family, grandparents or uncle and aunt, have a lot to offer. Be stronger for the parents and help them with the challenges they face. Be open and honest about the disorder, but put judgment aside. Be supportive and respect the decisions they make for their child with autism.

Bottom line

As a family, learn to be the best advocate you can be for the child. Be informed, have hope and keep learning more about autism. Families need to keep educating themselves on the best ways to help manage this disorder. Preparing financially for the future together is also a good idea. A sound platform like HDFC Life's savings and investment plans can help draw up a rational roadmap of future monetary requirements and how they can be successfully met. Autism affects people of all social and economic standing. Research shows that there would be many possibilities available for children with autism in the future. Each member of the family needs to gather great strength from each other and their support system. Changing the course of your child's life with autism can be a very rewarding experience.

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