Neeti Pherwani
So, your child has been diagnosed with autism/ASD (Autism Spectrum Disorder), and you have been trying to rationalise, get intervention and also trying to help your child? You want to enjoy watching your child grow, explore and learn, but knowing the challenges they may face also creates a fear within you. How can you manage your lives together without letting it take a toll on you and your spouse’s mental and physical health?
Acceptance
Autism or ASD, as it is called now, is traditionally defined as a neurodevelopmental disorder with symptoms like social communication difficulties, and restricted, repetitive and/or sensory behaviour or interests. Any parent or caregiver of a child with ASD goes through a lot more stress because of dealing with something that is new to them, and that’s absolutely okay. Acknowledge and accept that this will happen, because accepting it is the first step towards dealing with it. In most cases, as a parent it is difficult to accept that our child may have a disability or a challenge that can be lifelong. This leads to denial and delays in getting interventions for the child.
Learn, learn and learn
After acceptance, you can start educating yourself about ASD. Read up as much as you can – such a diverse set of behaviour with not much reasoning behind why the behaviour, can make it confusing in the beginning. Your child psychologist will also offer recommendations on what your child needs in terms of extra help, such as sensory therapy, physical therapy, remedial education or otherwise. Don’t be afraid to ask questions on what each one means and how it will be carried out. Every therapist has a different method, process or plan, so ask them as many times as you want about it since this will only help you to know better. As you learn and understand about ASD better, share this information with your immediate family and friends. Help diminish the ignorance about disabilities. Some people may reject the information, but even if one person learns something new, it is worth the effort. Knowledge will give you confidence and reduce your anxiety caused by confusion and guilt. You can even create a community with other parents of children with difficulties, thereby creating a support system for each other to lean on, while also learning how each parent finds their unique ways of working with their own child.
Professional help – for you and your child
If your child has been recommended therapy or a special school, then go and get the professional help required. The longer you wait, assuming that things will become okay, the more effort it will require for the professionals and your child to adapt to the therapy. Many therapists/schools also offer counselling for parents – attend them! These sessions can help normalise the feelings you are going through; the confusion or feelings of guilt that many Indian parents (especially mothers) are made to feel in context of a child with disabilities. You will also learn healthy ways of coping with stress or anxiety giving situations for you, your partner and your child. At the same time, following the steps above about learning will also help you distinguish between good therapists and quacks (yes, there are many relying on the ignorance of parents).
Get to know your child better
ASD is known as a spectrum because of the variety of characteristics that it shows up as. Think of it not as a linear scale with two extreme ends, but as a wheel, like the colour wheel with each ‘spectrum’ of a colour as a different characteristic. Now, make a spectrum wheel of the characteristics you see in your child particularly, and understand the pattern that the child has. Observe and understand your child, how they try to communicate with you and the difficulties they are facing. This will enable you to see them as a unique human being rather than fighting their challenges and then facing hurdles each time. It also helps them to feel like they are being supported and understood better. We cannot expect our child to adapt to the world but not make any efforts ourselves, right? Look for beauty in what your child has. Look at how the child finds innovative ways to live their everyday life and learn things even with challenges.
Cut yourself some slack
Understandably, you will be doing all that you can for your child. Although, there is always an added pressure because now you feel you need to prove to the world that your child can adapt. Why? And who do we need to prove it to? Instead, slow down and enjoy living and loving your child every day. Take time off for yourself, do things that make you happy and relaxed. It’s okay to look up easy ways on YouTube to engage your child in sensory activities at home. It’s okay to let them be by themselves. Every minute cannot be therapy for them. Let them make mistakes, drop things and pick it up by themselves. Don’t stress yourself or your child to make them fit into an invisible mould, when we can see how individuality is taking centre stage. Adults with disabilities all around the world are living their lives independently or with help – in any way that they choose.
You can give your child the best only if you are at your mental and physical best. Allow yourself to get support when you need, so you can be there for your child and yourself both. Raising a child with autism can be a beautiful journey and very rewarding in more ways than you know.