April 2 is the eighth World Autism Awareness Day. This day is celebrated to raise awareness about different aspects of autism so that families, societies, and governments can collectively devise policies and strategies for providing a better support system to improve the lives of people with autism.
Whilst awareness about autism, a broad-spectrum disability, has been increasing, there are several misunderstanding, myths, and taboos attached, in terms of what it is and what can be done. It is a fact that people with autism are increasing Worldwide; and so should the awareness so that there can be collective effort for better intervention, leading to reduced stress on the parents, care takers, and governments.
At a playground filled with kids, Adil* excitedly runs to the swing only to find that a girl is taking it. This particular moment is a litmus test for me as I wait for my son’s reaction.
My faint smile turns into a sigh of relief when he says, “Maybe I can wait and play in sand for some time.” He runs and jumps in the sand playing with dump trucks and other toy construction vehicles.
That moment defined triumph for me. He had learnt to wait for his turn and was okay to let go of things he really wanted to do. All this was unimaginable a few years back.
Going to the playground was a stressful experience. He had emotional meltdowns when things went unexpectedly. This, along with a passion for mechanical transportation in a functional but not symbolic way, sparse eye contact and most importantly, no reciprocity to my touch were the main highlights of his symptoms when he was diagnosed with autism.
Through this article, I want to share my experiences and observations of running an early intervention program when I was introduced to autism a few years ago when Adil was diagnosed as “at the risk of developing autism” at the age of 18 months.
That early warning turned into confirmed diagnosis almost 13 months later. He carried the label of “highly functioning child on the autism spectrum who has the resources of a charming smile, joy of music and very observant in relation to objects function but has difficulties in social interaction and communication and by stereotyped behavior and play.”
Children with autism are different, and even children who exhibit very similar symptoms and receive very similar treatment can have vastly different developments. There is no guarantee of particular treatment outcomes, and one cannot generalise one child's experience to another’s. But my experience and many studies indicate that Applied Behavior Analysis (ABA) can be an effective early intervention program for helping an autistic child to have a quality life and a positive effect on the families' daily lives.
I was not aware of any intervention program at the time of diagnosis and he was sent to an institute for children with development problems. However, I was fortunate to discover ABA, through a mother of another autistic child.
ABA is a holistic, and intensive special education, based on making the child learn communication, cognition and social skills. Thanks to the intensive training, it has given Adil and the enitre family reason for hope.
Today, Adil has made huge progress in his development through the intervention program – being a mother; I would say that within 18 months of the intervention program he is a completely different person. He is verbally active, excelling at academics and becoming considerably fluent in social skills. He is a happy go lucky boy who has opened up to the world around him. This has come with some idiosyncrasies of his own, which are integral part of autism. Most importantly, we, as parents understand him better and love talking to him to learn more about his unique perspective.
I want to share with parents of autistic children the 10 things that I learned during the intervention program for my son; I hope that these can be useful for parents who are (or want to) run an intervention program for their child with autism.
1. Wake up before it’s too late.
Parents hold the invaluable wisdom of knowing their child. Being with them 24/7, we know our child more than any pediatrician, family relative or friend.
Don’t fall for what your peers or doctor might label as “Oh! He will grow out of it. Give him some time.” Waiting is NOT an effective, educational practice.
Another ineffective practice, quite common in our society is to go for different “totkas” to get the child to function normally. My son was ahead of his age in the academic skills, narrating ABCs and counting from 1-100 but there were no verbal or social skills. Some told me to get his tongue “unlocked” through a clinical procedure, some suggested to feed him hot green chillies.
Our advice is once you see the red alert, go for the diagnosis. Don’t wait. Adil’s success is 90 per cent attributed to a diagnosis at an early age.
2. Accept that your child has autism.
When a child receives the diagnosis, parents go through a range of emotions from anxiety, depression, complete denial of the diagnosis, fear and confusion for what the future holds for their child; there are many question marks.
At this critical time, support from family and friends is a huge asset. I was visiting my parents at the time of my son’s diagnosis. The maturity with which my parents helped me get through the initial shock greatly helped me prepare for the challenges ahead.
My husband has a ridiculously positive attitude towards life and I don’t mince any words here. It was his positivity that gave me the confidence. He chose to say that our child “can do” things as opposed to us being told that he couldn’t.
He chose to look at Adil’s strengths instead of his struggles; he chose to think life would be beautiful with him. It is extremely important to work through these feelings and to get down to the task of making the impossible possible.
3. You are your child’s trainer, build a team to support you.
I quit my career to work full-time with my son. When we started the training (Applied Behavior Analysis) at a clinic, I would attend the sessions daily with my son.
I observed at length how the training was conducted. The aim of the training was for my son to be able to generalise the skills he learnt at the clinic and apply them to life outside, I realised that the home environment best served this purpose.
I then took charge of his training and continued to conduct it at home. Life took a 360-degree turn with the start of “home training.” Scheduling, structuring every day routines, time management, goal setting and tracking, behaviour tackling were my daily tasks.
It started out rough, it was not easy for Adil to accept me in the new role of his “chief ABA trainer.” But just as autumn caves in to a beautiful spring, he started shining. He drastically improved on a cognitive, social, self-help and physical level.
I hired two psychology students to help me conduct the training. For a year, we conducted 30-32 hours of intensive therapy, this proved to very effective. With a basic “drill list” provided by the main psychologist, I simply followed my son’s lead and improvised the training skills. With time, we shifted focus from cognitive to social development and motor skills.
4. Build a “can do” network around you and your child.
The doctors had labeled my son as a high functioning autistic child who would remain socially inept and verbally challenged throughout his life. This was an unacceptable proposition for my husband and me.
One of the first things that I did was to build a network of people with a “can do” approach. This included my immediate family and friends, my son’s trainers, teachers, etc. I made use of online resources to read stories to my son in which characters overcome struggles in their daily life. I myself read up on Temple Grandlin and others who had emerged successfully from autism. This gave me the confidence to believe that given an effective way to treat autism, my son indeed “can do” things.
It is challenging to survive in a society that picks on people that are different. We, as parents, get chastised for having “abnormal” kids but the sooner you grow a thick skin, the better. Don’t let other people’s opinion effect you.
5. Get to know your child, push the limits whenever possible.
It is very important to focus on the child’s interests, and then build his/her skills around them. My son was always fascinated with transportation and thus willing to talk about it — this was the first step in his verbal communication progress.
From narrating factual statements about transportation to coming up with made-up stories, his verbal communication improved considerably. Once the communication got fluid, his socialisation skills started improving too.
The initial phase of the training was focused on making my son follow instructions and learn academic skills, all done sitting across a table. As the table training improved, the real challenge was to make him understand the world around him. I felt it obligatory to introduce him to the world that he finds so confusing. We would sit in different settings, parks, cafes, bus stops, shops just to get a feel of the environment and how things function.
Book reading also “healed” him. Through books, he could relate to different life concepts, emotions and feelings and then connect them with real life situations. I worked on the “theory of mind” concept where he would be challenged to think from another person’s perspective. For e.g. While reading the book “Little Red Riding Hood“, I would ask him, “When little red riding hood, knocked at her grandma’s door, who did she think was in the bed?” Concepts like these took time to sink in, but once the results started coming in, it was sheer joy.
6. Interact with “normal” kids.
My son was always imitating other kids without knowing what it meant. When the training started showing results, I strongly advocated for my son to move to a normal kindergarten. I believed that the company of other kids was the best environment for him.
He would observe his peers, which has helped him hone his social interaction skills. Now he keeps a “Friends Book” where he makes notes about his friends and their interests. The idea is for him to take an interest in other children. I also arrange “play dates” with children in his kindergarten to make him practice his hosting, interaction and socialisation skills; this interaction has been most beneficial.
7. Prepare the sibling.
Siblings can be the most loyal friends that your child will ever get. They have the magical power of bringing out the best in each other. This requires you to prepare your other children to be lifelong friends with the other.
Our son’s handling is not complete without his younger brother, who helped bring out the many qualities that were hiding within my son. He is the perfect antidote for him. Don’t deprive your child of this antidote.
8. Autism is not a disease.
Every form of being in this universe has its own challenges. This is how God made His creations. No one is made “perfect.” For example, I have my own share of challenges that although, did not severely affect my development but have had an impact on the way I am today. Will that be classified as a disease?
So when the diagnosis report of my child said that he is highly functioning but has social challenges, does that make him sick? No.
Being autistic is not a disease or an abnormality; it is a way of personality. Over time, autistic people learn the ways of presentation that allow them to function normally in the society. My son had a different pace of learning when it came to social development but through appropriate training and intervention, he is catching up with his peers.
The focus should therefore be on an effective way to raise a child diagnosed with autism rather than on “curing” autism.
9. Allow the discovery of a new you.
My son’s diagnosis changed me for the better; his diagnosis helped me accept myself. For the first time in my life, I learnt to push aside what I did not like about myself, along with any negativity.
I learnt to appreciate myself. Today, I more at ease with myself. I learnt to be patient, compassionate and understanding with my son and in effect, other people. Most importantly, I learnt the importance of appreciating life and what it had to offer.
10. Make parenting less stressful.
I became a more conscious parent. Once I found peace within myself, I found it easy to be a more mindful parent with my son. Being with him, did not seem stressful anymore.
I started to invest more time, energy and thoughtfulness in my parenting. I started doing things that I had never done before. I made myself more available to him. This added a new dimension to our relationship. My son and I feel more at ease with one another now than we have ever before. There was no resentment or irritation from either side. It has also helped me set ground rules for him which, if not always, are frequently followed by him in good stride.
I will always be thankful to my son who made me feel complete, and proud of myself. Hopefully, I can live long enough to one day see him be proud of himself. Then, I can thank him for the favour he did for me.
The early intervention development program gave us reason for hope - hope not that he would shed his “autism” one day but that he would be a thriving and contributing member of society.
*Name has been changed to protect privacy of the individual.