An Interview on Autism
by Irshaad A. Rashid
On April 18, 2022, I had the opportunity to ask my friend Asim a few questions about his experience raising a child with autism. Below are some valuable excerpts from that conversation. .
Disclaimer: The contents of this article are not medical or legal advice. For medical or legal advice please refer to an appropriate professional.
We began with the recitation of Surah al-Fatiha and As-salatu’l Ibrahimiyya.
What is your daughter’s diagnosis?
My daughter is diagnosed with autism spectrum disorder.
If any, what were the signs of your daughter possibly having autism?
After explaining some signs that can occur before and during birth, Asim said: Some early signs of my daughter’s autism were her flapping her arms when excited and having delays in hitting milestones such as having the ability to turn herself over, crawling, walking and talking. The term I was given to describe these delays is global developmental delay (GDD). Since it’s common for children to catch up from these delays with no future impact, my daughter underwent therapy (e.g. to develop muscle strength) while we monitored her progress.
How was your daughter’s autism diagnosed?
My daughter underwent a series of non-invasive play-based tests. Observations were made on her behavior (e.g. eye contact) and how it compared to other children her age. Due to the scoring on these tests, a developmental pediatrician diagnosed her with autism.
Here’s an important point about diagnosing autism. One the one hand, there is care not to make a diagnosis of autism too early for a child. A reason for this as mentioned, is that not all cases of developmental delay are due to autism. On the other hand in cases like my daughter’s, an earlier diagnosis of autism would have been very beneficial. Early access to funded intervention can put a child further ahead, as those first years of life are critical for development. Learning basic functions such as potty training are much harder to learn later in life for some children with autism.
How does Autism currently affect your child?
My daughter will soon turn six years old (insha Allah). She is non-verbal, not potty-trained and has difficulty with fine motor skills (e.g. using a spoon to eat). We have to be a little more aware for her safety as she has tendencies like wanting to put small things in her mouth. Learning a task takes far more repetition for my daughter than it would for other children. Next year will be an appropriate time for her to be tested for intellectual developmental disorder.
How has your daughter’s autism impacted your other children?
There are certain things we cannot do as a family. When planning our day to day as well as outings, we have to take extra considerations into account. For example, my daughter may become frightened in certain situations. With other aspects of our family dynamic and their being young, I’m sure the experience has been quite challenging for my other children.
What resources have been helpful with your daughter’s autism?
My daughter has undergone speech therapy, physiotherapy, advanced behavioral analysis therapy (ABA) and occupational therapy. ABA therapy improved her correlation abilities such as being able to ask for things using various forms of communication. The occupational therapy helped improve her daily functionality by developing her fine motor and sensory skills.
Day Care has provided her with a school environment where she can observe and model other children.
Bringing in an assistant familiar with child developmental issues has been a great help. Multi-tasking with the above and more can make a parent feel run-down. With an assistant, I am able to trust them with my daughter for a little bit while I focus on handling other priorities. The assistant is able to help my daughter with the home exercises assigned as part of her therapy; homework that is so important to her development and growth.
What were some of the breakthroughs in your daughter’s development?
A major breakthrough was my daughter eventually being able to walk on her own. Before that, it was becoming increasingly difficult to carry her weight as she grew. Another breakthrough was her learning to hold her bowel movements before going to the bathroom.
How would you describe your daughter’s personality?
She is outgoing, interactive, and caring. She likes to share a lot. In particular, one of the things she loves is anything to do with water, such as washing her hands and bath time. She loves when I am cooking and wants to observe the process as close as possible. She is also very fond of animals and loves seeing dogs when we go on walks throughout our neighborhood.
What has raising a daughter with autism taught you?
Of my strengths and interests in life, I had not expected parenting to be my forte. However raising a child with autism and in particular a daughter with autism has helped to refine a patient and a nurturing side of me.
What perspective has faith given you in raising a daughter with autism?
Years ago, I used to frequent gatherings of `ilm (sacred knowledge) and zikr (remembrance of Allah), but having a child this dependent on me limited my ability to attend these gatherings. My faith has taught me that raising my daughter and my other children is an act of worship in itself and a path to Allah (the Most High).
What advice do you have for other parents?
Parents should not fear stigma and allow it to delay testing and diagnosis. The testing is once again, non-invasive. And an early diagnosis can open many doors and resources that can greatly help a child’s development in their formative years.
What are your thoughts on advocacy for people with autism?
In particular, I encourage our (Muslim) community to excel in advocacy for those with autism. In our masajid (mosques) for example, there could be more resources to families with kids on the spectrum. I once went to pray in a masjid after a long time away (due to taking care of my children), and my daughter was crying because she became scared while hearing the adhan (Muslim call to Prayer). Someone complained to me afterwards about the noise (of my daughter crying). If we all work together, it will be worthwhile to find ways to accommodate for these types of situations.
What do you hope for your daughter?
At the very least, I hope (insha Allah) my daughter can attain a minimal level of independence. She may require assistance throughout her life, but I hope she will not have to rely on anyone to help with her basic functioning.
What do you want everyone to know about autism?
It’s real and it’s out there. It will be good if society increasingly acknowledges it so we can all be more empathetic, inclusive and supportive to both children and adults with autism, as well as families who have members with autism. I think it will have a positive impact on everyone's lives to know and love someone with autism.
Al-Fatiha!
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Alhumdulillah, may Allah reward you.
Very informative and heart touching. May Allah bless the parents and make things easier for them.
Very insightful and inspirational. JazakAllahkhair for sharing your intimate story.
Thanks for sharing this. I found this article to be very informative and full of hope. It must be a tough road for parents but it makes me happy to know that there are resources available. You can really see that he has so much love for his daughter. Subhanallah!