“Autism — when I first heard the word, I felt total despair. For me it seemed as if my child had been taken away from me forever”. This was Ayesha’s first reaction when her child was diagnosed with Autism. “At that point I still didn’t know what it all meant. I started reading about it, and signs became clearer when I observed him. Will he be able to go to college? Will he be able to get married? These were the initial questions in my head”.
Autism has a mysterious aura surrounding it. At best, to most of us it brings up memories of watching the movie ‘Rain Man’ or ‘My Name is Khan’. This lifelong complex developmental disorder occurs on a spectrum called Autism Spectrum Disorders (ASDs). Autistic people have difficulty in relating to people and everyday situations.
Behaviours may range from totally shy to overly hyperactive. Either way this may result in social isolation. Parents of autistic children may be blamed by others of bad parenting. Dr Eric Hollander, Director of the Seaver and New York Autism Centre of Excellence, cites language based problems, social difficulties and repetitive behaviours as the three core symptoms of autism diagnosis.
Depression, anxiety, seizure-related problems and attention difficulties are sometimes associated with autism. Autistic people have multiple sensory hypersensitivity — i.e. they can be extremely sensitive to sound, light, touch or taste. Autism figures indicate that it’s on the rise. But is it or are we just more aware now and diagnosing it better and faster?
Khadijah headed to the doctor due to delayed speech in her son, and the initial diagnosis revealed mild autism. She was advised behaviour therapy as her child was just two-and-a-half years at that stage. She was told not to scold the child; to shower him with love, making sure he felt really appreciated. Now her son has turned five and is undergoing speech therapy. She advises seeking out the best doctor as that put her on the right track. She went on to have another child and thinks that the condition of her autistic son has improved because of having a sibling — social isolation has improved.
For Ayesha, whose son is on the high end of the spectrum, it’s been an uphill climb. “In the beginning it was a lot of despair and sadness. I still have that. It is very hard on parents. There are lifestyle changes that come with it. You cannot take these kids to certain places, e.g. fine dining restaurants, museums, movies, or any other place or event where you have to act appropriately or in a certain way. Vacations can be stressful, because you constantly have to keep an eye. But you just learn how to make the most of the situation and not give up. I am learning that when life throws you a curve you just have to deal with it. You need to focus on helping your child and others instead of crying all the time and blaming your stars or fate or God (believe me I have done all that). Having faith in God and praying brings a lot of peace and perspective as well.”
She has also found peace by becoming active in different autism support groups. “When I see other people who are in the same boat (or even in worse situations than mine), I count my blessings. Being able to socialise with other families with kids with autism really helps.” She also feels better when she is motivated to do something about this, create awareness, be associated with programmes to help autism, give charity for autism research programmes, etc.
Ayesha feels her life is like a train journey that has suddenly changed directions. “You have no idea why the train changed directions, what happened, where you are going and what to expect in the end. That is how a parent feels when their child is diagnosed with autism.”
Note Googling ‘Autism in Pakistan” reveals information about Resource Centres and support groups, etc.
Your child has been diagnosed with an ASD. Now what?
There are many different therapies that can be used to help a child with autism. While there is no one therapy that is right for all children, most experts agree on three things
1. Therapy should begin as young as possible (around 2-3 years).
2. Therapy should be tailored to the specific needs of the child.
3. Therapy should be re-evaluated as the child develops (every six months for very young children).
Some ASD Challenges
Relating and emotion
– a tendency to avoid interaction;
– difficulty paying attention to or making eye contact with others
– repetitive statements, play or behaviours
– failure to develop pretend play
– intense fears about ordinary objects, activities or events
Language and communication
– problems following simple directions
– echolalia, or repeating what has just been said
– difficulty making needs and desires known by gestures, words or play
Regulatory and sensory-motor
– difficulty dealing with changes in environment
– avoidance of hugs or light touch
– does not point to show you things
– poor coordination
– self-stimulatory behaviours (spinning, hand-flapping, head rolling or banging)
Only a trained professional such as a neurologist or psychologist can provide a diagnosis.