My personal journey with Autism…

My little prince, born after years of prayers, covered his milestones like any other child and was the most joyous child to be around. With each passing day, like any other parent, we began weaving plans for his future. Little did we know that our life was to take a completely different path. As he passed his first year, being parents, there were certain questions that crossed our minds. Why did our little prince flap his hands when he was happy? Why, at times when he was engrossed in his activity that he did not turn his head to the call of his name? At this stage these questions did not bother us to the extent that we would search for any answers. Days and months passed and my son was now was almost two years old.

His speech had still not developed but I was given reassurance by family that this was not unlike the speech delays in his father’s childhood development. Some suggested dietary supplements to help him talk. Their suggestions did not sit right with me and my motherly instinct told me that there was more to this than just speech delays. I began to notice that he did not pay any attention in people and would scream whenever we went to meet relatives or visit any public places besides parks. Though he loved playing and being hugged and cuddled by us, he did not show any interest in playing with other children.

I cannot forget the day when I took him for a visit to a paediatrician for his cold. As the doctor approached to do a checkup, my son screamed and wanted to run out of the room. I tried my best to bribe him and keep him calm but with no success. That was when the doctor said he suspected my child had ‘autism’. I froze with shock, unable to comprehend the doctors unexpected diagnosis. I don’t know how I managed to walk home that day. Once home, I began searching on the internet and the pieces started to fall into place. Though I wasn’t 100% completely sure, many of the symptoms were present in my prince. In the middle of tears, I broke the news to my husband, who like any other father, had his reasons for denying the possibility.

For reassurance, we took him to a child psychologist who was reluctant to verbalize the diagnosis to us but said he needed speech and occupational therapy. I am a person who listens to my heart before making any decision. I did not get a good feeling for starting his therapy in his recommended rehabilitation center. I continued searching for other options and finally found a center which specialized in Autism and after getting a definite diagnosis, we started his therapy.

As a professional (clinical psychologist/ family therapist), I felt stupid for not realizing earlier that my child had autism. As each autistic child varies from another and unlike children with Down’s syndrome, their appearance is completely normal, often parents may take long to realize that their child is autistic. I felt angry, that for months I had given in to his demand to watch television for hours. The content was not the issue as it included a lot of Quranic verses and Adhan. It was the repetition that was the problem. Children on the Autism spectrum disorder are often restricted, rigid and even obsessive in their behaviors. They have a preoccupation with a narrow topic of interests and a strong need of sameness, order and routines. They can get upset with change in their routine or environment.

Autism spectrum disorder (ASD) is characterized in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviours. Autism appears to have its roots in very early brain development. However, the most obvious signs of Autism and symptoms of Autism tend to emerge between 2 and 3 years of age. Autism statistics from the U.S. Centres for Disease Control and Prevention (CDC) identify around 1 in 68 American children as on the Autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that Autism is four to five times more common among boys than girls. An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with Autism in the United States.

ASD affects over 3 million individuals in the U.S. and tens of millions worldwide. Moreover, government Autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.

Each individual with Autism is unique. Many of those on the Autism spectrum have exceptional abilities in visual skills and academic skills. About 40 percent have average to above average intellectual abilities.
Autism is a lifelong developmental disability that affects how people perceive the world and interact with others. Autistic people see, hear and feel the world differently to other people. The characteristics of Autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these “limit and impair everyday functioning”.

By the time, we started his therapy sessions, our prince was 2 and half years of age. We started ABA (Applied Behavior Analysis) which is the most widely used approach to deal with Autism especially in young children. It is based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and bring improvement in behavior. The therapy protocol required three hours of one-to-one home based sessions. Initially, it was emotionally difficult to see and hear him crying, while I could only watch on helplessly from behind a camera. A part of me felt like opening the door and hugging him and ending his sessions there and then. I gulped my tears and prayed to Allah to help me through this. The one thing that kept me going was that I was sure that my lord will not test me more that I can bear.

‘Your wealth and your children are but a trial and Allah his with him a great reward’

Over time, my son got used to the sessions and started improving gradually. His eye contact improved and he began to understand simple instructions. He started doing tasks such as simple puzzles and beading. We celebrated the improvements with great delight. Things that other children learn naturally, are learned by children having autism, after several days of continuous efforts.
The ABA therapy programme was revised every month followed by an assessment. I would have butterflies in my stomach on his assessment days as if I was the one sitting an exam. There were times when he showed outstanding progress and other times where he showed severe behavioural problems. One of the challenges we faced was that he refused to walk on his own when outside the house. He would throw a tantrum, kick and scream if we did not carry him. A few times I tried leaving him for up to 20 mins and walking on to an observable distance, in hope it would be motivation for him to follow, but he would not. I remember passers-by asking me to “have pity on the poor child”. Little did they know how difficult it was for me to see and hear him cry. One lady, watching my little prince crying and stamping his feet on the ground, came to me and said. ‘If you don’t want your child, give him to me”.

My heart broke and I had to stop tears from rolling down my cheek. I went back to carrying him, and only my close family could sympathize with me and were concerned that I was causing strain to my back and physical self. All my efforts to make him walk failed until finally, a trip for the Ziyarat of Imam Redha (a.s), a miracle happened. With the help of my brother and sister in law, we managed to make him walk from the tomb of the King of Khorasan to the main entrance and then again at Jamkaran from the parking to the mosque without any cries or screams. For those who have been to these places know that these are both long distance walks. I was overjoyed and knew my Imam had heard my prayers.

‘Dua is an amazing exchange. You hand over your worries to Allah and He hands over his blessings to you’.

Today, when I write this article, it has been almost two years that my son has started his therapies, which include ABA, Speech and Language therapy, and Occupational therapy. The combination of these, a lot of patience, compromise, and faith in Allah have helped us through. He has just started going to a pre-school with a helper. There was a time when our ears craved for him to say mum or dad but thankfully, today we must tell him to calm down and stop talking for a few minutes. Children with Autism tend to repeat their sentences and need to be guided to carry on meaningful conversations.

It is extremely difficult for others to understand the day to day life of a family having a child with autism. Each hour must be well planned as leaving your child to do whatever he/she wants gives them a chance to go into their own shells doing aimless activities such as lining up objects or spinning objects for hours. It has been correctly stated;

‘Autism parenting is waking up tired and going to sleep tired’

Children with Autism may show other symptoms such as hyper activity, poor concentration and behavioral issues. What helps us understand our children is making use of the knowledge and support available by talking to other parents, professionals and of course; prayers.

Children with Autism see the world in a very different way. The filtering mechanism in their brains often works in a different way in assimilating the senses such as touch, smell, hearing, taste and sight. They may be extremely sensitive to some senses and find seemingly routine events fascinating – the patterns of light on a wall, or the rustling leaves in the wind. The autistic child may also be unresponsive to sensations that their parents find unpleasant, such as extreme heat, cold or pain.

Sensory experiences that parents don’t even notice may be extremely frightening or unpleasant for a child – the feel of a certain fabric, sounds of certain frequency, particular colors or seemingly bland foods. The child’s reactions can easily be interpreted as willful misbehavior. Moreover, they show difficulties in movement and coordination. Simple tasks such as dressing up can be extremely difficult for children with sensory issues. They may avoid wearing certain textures or eating certain foods due to their temperature or textures. For instance, my son would not eat fruits nor hold finger foods till the age of three. Only recently he has started eating fruit and holds a piece of bread in his hand. Similarly, tasks like washing his hair and giving him a haircut were tasks that we dreaded but now with the grace of Almighty Allah and occupational therapy, these tasks have become easier.

As a professional, and a mother of a child with special needs, I come across many parents struggling to accept that their child has a problem. My heart aches for the child, because the sooner a child who is different and needs help is accepted, the earlier you can work on bringing a productive change for his/her development. Most of us go through increasing number of mixed emotions when we come across an unexpected stressor in our lives. We may have feelings of anger (Why me?) or go through a stage of denial (nothing is wrong with my child). These are natural feelings but if we do not overcome these feelings we may fail to accept the reality and look for solutions. The golden period for therapy for a child with Autism is under 5 years. It is the time when significant learning can take place, though there are periods when the child may even regress in his/her abilities. Unfortunately, Autism cannot be cured and individuals may continue having difficulties adjusting to this world throughout their lives. We can help them adjust by increasing our knowledge about the challenges they face and the struggle their families go through. Before labelling a child as ill-mannered or pointing out a finger on any mother’s parental abilities, take a moment and think… maybe this child is different?

(This article was submitted anonymously)

© 2022 - Ahlulbayt Islamic Mission (AIM)