How To Start Parenting A Child With Autism Spectrum Disorder
Created by Dr. Vidya Ganapathy Updated on Jan 21, 2020
“Nobody can go back and change the beginning, but anyone can start today and make a new ending.” - Maria Robinson, an author on Child Development
In my years of counselling and advising the families of children with special needs, I have seen the entire gamut of emotions in their families. At times their ignorance and resistance to the present reality are enough to make the therapist angry. On other occasions, the parents are overwhelmed enough to move to tears.
Autism Stats From the World
As per WHO statistics one in 160 children suffer from autism spectrum disorder (ASD) globally. ASD, which starts in early childhood easily extends to the adulthood of these children. Many ASD children have the potential to grow into independent adults with proper care and support from parents.
However, worldwide, children with autism suffer from inadequate attention, discrimination, stigma and abuse due to lack of awareness.
Life with An Autistic Child
Children with severe ASD will need life-long support. But the path, which a caretaker of an autistic child must walk, is not straight or simple. Looking after an autistic child can be a complicated task which needs timely intervention and proper guidance. The caregiver (in most cases, the mother) has to be specially equipped and must be supported by the family in her efforts.
If you are a family member or a mother to an autistic child, remember that you may make a few mistakes along the way, but so does everyone else. However, make sure you pick up your pace and celebrate the positive developments along the way.
Parents generally grapple with two-stage challenges:
At the time of diagnosis
During the intervention
Diagnosis - The Great Wall Before Autism
Many times, you, especially mothers, already have an instinctual feeling that something is ‘wrong,’ and your child is ‘different’. Many families waste months, even years, with unqualified advice that ‘grow out of his odd behaviours’.
Children are often diagnosed as hearing impaired, intellectually subnormal or suffering ADHD (Attention Deficit and Hyperactivity Disorder). The wrong diagnosis obviously leads to wrong treatment. Finally, when all options have been exhausted you see the professional who gives your child a new label ‘ASD (Autism Spectrum Disorder)’.
When a child is diagnosed to be on the spectrum, the family is devastated. Many would ask the expert for medication and possible treatments only to be told that there is no known cure for ASD. In fact, the family must invest a lot of time, effort and money in the therapy of the child.
No wonder, as parents, you go through anger, guilt, bargaining, blaming and denial. Some parents never reach the stage of acceptance of their child’s diagnosis. These parents may waste precious time in ‘therapist shopping’.
Can An Autistic Child Become Normal?
Autistic children have special needs, many of them may, in future, lead a normal and independent life. But, children with severe ASD will need life-long support from the immediate family. In any case, the family must address the learning and development challenges of the autistic child with professional guidance. But first, they need to come to terms with the new reality.
Much like any other challenge life could throw at you, acceptance is the key with the ASD child care as well. The sooner you can accept that your child has different needs, the more helpful it is in allaying negative feelings like guilt, anger etc. Acceptance is also crucial in enabling you to participate in the necessary intervention planned by the therapists.
Effective and early intervention can save a lot of emotional harm for you and the child. You can take some time to put your thoughts in order, read up about the condition, about the latest scientifically proven methods of treatment. You can approach professionals with your doubts and queries, network with other autism parents to learn various techniques of teaching certain skills to your child and more.
But first, you must accept the situation. So that you can continue and sustain the journey towards positive and helpful action.
How to Start on the Acceptance Journey?
When an autistic child comes before our eyes, or we imagine him/her in our mind’ eye, the story that we often form is that ‘he/she is autistic’. Remember that his story is not just one of autism.
There are many other ‘stories’ to him. For example, he’s tall, he’s 4 years, he’s cheerful, he likes to eat cabbage, he loves to paint, he adores his sister etc. The autism page in the story means he has some different needs and capabilities, and yes, a few limitations. But it is not what defines him, he has so many other facets to him.
Also, remember that it is indeed not necessary to remove the autism from the child and make him/her non-autistic. Autism is one of the cogs in the story of his/her life. Above all remember s/he’s your child, and just like any other child, he needs love and affection.
How To Start The Positive Journey for The Child?
Once you come to the plateau of acceptance, you are now ready to focus on the positive intervention plan. Here I would like to give the analogy I often use while explaining the situation to the family of the child with ASD.
"Imagine the family as ‘Hindi’ speakers, and the child as a someone who speaks ‘German’. If you want to understand each other better, there could be only one of the two possibilities:
The child learns to speak Hindi, or
The family learns German
The next step should be obvious. As the child only learns from the family, the family must learn German to teach the child Hindi."
Easier said than done, but if you take an interest and enjoy these classes you will gradually start loving it as you build new bridges with your child. Let the child in you come out.
Just as your child shows excitement on learning something new, you would also regain the enthusiasm to try and understand all aspects of your child and his therapy in a whole new light. So, while you are on this journey, you may have doubts and concerns. Please feel free to reach out to me anytime in the comments section or on Parentune and I would love to answer your queries.
Dr Vidya Ganapathy is a consultant psychiatrist with more than 15 years experience and has trained at Nair Hospital, Mumbai and NIMHANS Bangalore. She conducts parental counselling, and play therapy and individual counselling for children, as well as wellness programs in schools. As a certified therapist for early intervention in autism, she designs Individual Intervention plans for her clients on the spectrum. Her multi-disciplinary team provides intervention in the clinic, home, or group settings.