Today is World Autism Day and I want to share what I learnt from Autism, after all we have been sparring for the last three years and I have actually come to respect it. When my son was four and a half, he was assessed with Sensory Processing Disorder and mild Autism. It took another year and a half to get a formal diagnosis of Asperger’s Syndrome. For about a year leading up to the assessment, my spouse and I met about four or five doctors to figure out what was wrong with our child. He had speech delay & echolalia but we were assured speech delay affects even normal children & there was no cause for concern. Why did it take so long to get an assessment ? We were blinded by his exceptional abilities in reading and music and hence the fact that he was not developing as well in other areas was overlooked. The signs were there but we missed reading them and so did our doctors. How could that happen? The reason is simple. Autism awareness is practically non-existent in our country and regular paediatricians are not trained to detect early signs of autism. If the child has eye contact and is friendly they rule it out, as simple as that! This is exactly what happened in our child’s case. The gut feeling that something was amiss with our child persisted and ultimately it led us to a Child Guidance Centre and assessment.
What Worked For Us :
Early Intervention And Therapy:
Once we got an assessment , we started off with regular and sustained therapy on a war footing. If you are a parent, watch out for milestones and if there is a delay, consult a specialist instead of procrastinating. If your child has delayed speech, take it as a red flag and meet a clinical psychologist. The earlier you detect autism and start early intervention, the better your chances of managing it. Therapy works wonders and we have seen amazing progress with our child. It is also important to have faith in the therapists and build a relationship with them.
As parents we all want perfect children but if there indeed is an issue and you get a diagnosis of autism, accept it. Acceptance is half the battle won as it means acceptance of your child along with his/her autism. It is sad but I have seen many parents in denial and even refuse the child the required intervention. Children are very good at picking up vibes & if you have not accepted them, they sense it progress in therapy becomes that much more difficult.
Autism is a lifelong condition with no cure currently available. However with the right intervention it can be managed well and many people go on to lead productive and fulfilling lives. As the autistic brain is wired differently it presents its own set of challenges on a daily basis and there are good days and bad days. Hence it becomes all the more important that you have some sort of support be it friends or family, ideally both. It also goes without saying that it is very important that spouses support each other and be equally involved in the child’s life.
Schooling is an important aspect of every child’s life and you need to figure out the best way of educating your child as every child is different. It is important to be transparent with the school about the child’s condition and interact with them on a regular basis. A recommendation letter with some pointers on how to handle the child goes a long way in making the teacher and the child comfortable with one another. Maintain open channels of communication and build a rapport with your child’s teachers and special educators so that they connect with you and your child.
Society & Stigma:
In India any kind of disability is considered a stigma and hence many families hide the fact that their children have ASD and are undergoing therapy. This can only change when parents start opening up and educating people that autism is not a disease. Some of the most brilliant personalities in the History of mankind were rumoured to be autistic including Albert Einstein, Isaac Newton and Amadeus Mozart. Remember people who care will always support you.
Once you know about your child’s condition, try to learn as much possible about it. Talk to your child’s doctors, therapists and teachers. Attend workshops, read books and articles so you know how to tackle it to the best of your ability. Autism is not your enemy and the abilities you see in your child are partly due to autism. Accept the fact that autism and your child are inseparable and embrace this reality.
The more exposure you give, the better the processing develops in the child. We try to give our child as many different experiences as possible & pluck him out of his comfort zone. We go for movies, use public transport, do road trips, socialise and try to lead as regular a life as any other family. This has helped us considerably in increasing our son’s flexibility.
Rest And Recharge:
It is crucial that you take time out on a daily basis to recharge your batteries as living with Autism is extremely exhausting and tiring. Do what makes you happy and never for a moment feel guilty, after all you are doing your best for your child and you can do that only if you are well rested .Listen to some music, read a book or watch a romantic comedy.
Celebrate your child:
Maintain a daily record and try to look at the positive aspects even if it has been a bad day. Every little step our child takes forward is a cause for celebration for us. We try to give him a lot of laughter & love. I have seen parents get so bogged down by autism that they forget the child. All kids, autistic or otherwise have a right to a happy childhood so enjoy your child & make happy memories.