A Father’s Journey with Autism- Chapter 25


In this blog, I aim to address two crucial questions that often weigh on the minds of young parents who have received the diagnosis of autism spectrum disorder for their loved ones.

Why Me?

When Simi received the diagnosis of Pervasive Developmental Disorder (PDD) or possibly Autism, my partner and I, as young parents, embarked on a journey of analysis, attempting to understand what might have caused our child to be affected by Autism. Yet, despite numerous medical tests and examinations into our family history for any potential genetic factors, we found ourselves without definitive answers.

Frustrated by the lack of answers to our pressing questions, my partner and I turned to various spiritual paths and heeded the advice of well-meaning friends. We engaged in numerous rituals, visited auspicious locations and sought blessings from revered individuals. However, in our quest for clarity, we encountered deceitful individuals within these realms, leaving us feeling disillusioned. Despite this, we cannot discount the possibility that the progress Simi has made may somehow be influenced by these prayers or blessings.

Ultimately, we found no definitive answers and embraced the reality. Rather than dwelling on the unanswerable question of “Why Me?”, we chose to view the situation as a challenge bestowed upon us by a higher power. Accepting that we were chosen to care for God’s beautiful creation, we moved forward without wasting time on futile inquiries.

It’s crucial for young parents not to be discouraged by an Autism Spectrum Disorder (ASD) diagnosis but to take immediate action. Consulting experts like Occupational Therapists, Behavioural Therapists, Speech Therapists, and doctors working in the field etc.  is essential to tailor interventions to the child’s needs. While we acted on Simi’s diagnosis, dwelling on questions consumed valuable time. Instead, swift action and collaboration with specialists can significantly impact a child’s development and future prospects.


What will happen to my Child after 20 years?

In the early 2000s, with limited autism awareness in India, uncertainty loomed over the future of individuals like Simi. Despite early interventions, thoughts lingered about Simi’s adulthood. Spiritual gurus offered assurance that by her early twenties, she would be “almost OK,” basing it on the belief that her mental age trailed her physical age by about five years. This projection suggested she would behave like a 15-year-old, deemed mature in contemporary terms. While hopeful, such forecasts emphasized the ongoing need for support and understanding for autistic adults navigating a world still learning to accommodate their unique needs.

The assumptions made about Simi’s future based on her mental age lagging behind her physical age have proven unreliable in the real world. Despite reaching the age of 25, she continues to exhibit behaviours more typical of a 9-10 year old girl. This illustrates that the gap between her mental and physical age hasn’t necessarily remained consistent over time. It underscores the complexity of autism and the need to recognize and support individuals like Simi based on their unique needs and abilities, rather than relying on generalized predictions or assumptions.

Simi’s progress has far exceeded our expectations, thanks to the dedicated efforts of everyone involved in her life: family, relatives, therapists, doctors, teachers, social circles, and above all, the blessing of Almighty God. We are deeply grateful to all those who have contributed to Simi’s growth, whether directly or indirectly. Their support and commitment have played a pivotal role in helping Simi achieve milestones we once thought impossible.

Simi’s present achievements, contrasting with our past concerns, offer encouragement to other young parents:
1. Simi graduated from 12th Standard in 2015.
2. She completed a certificate course in Multimedia.
3. Participating in numerous music competitions, Simi has amassed several prizes. She continues her journey in Classical Music (Vocal) , completed  5th year in First Class with distinction from Prayag Sangeet Samiti, Allahabad.
4. While her communication skills still require improvement, she can articulate her needs to some extent. Further she has some behavioural issues which require proper management.
5. For the past 6-7 years, Simi has been engaged with AADHAR Vocational Centre at Action for Autism, enriching her skills and experiences, enjoying her journey with her team.

Here are some straightforward tips for young parents caring for their neurodivergent child instead of looking to the future:
1. As parents, you are your child’s best therapist. Seek guidance from experts, but actively engage with your child yourself.
2. Remember, no doctor or therapist can work miracles for your child. The potential for transformation lies within you.
3. Dedicate 4-5 hours of quality time to your child daily. Shower them with love, affection, and blessings—parents’ blessings hold immense power.
4. Refrain from speaking negatively about your child to others. Negative words and thoughts can adversely affect your child’s well-being.
5. Avoid discussing your child’s challenges in their presence. Even if they seem absorbed in their own world, they are sensitive to your words and emotions.

Every child is unique and requires personalized care and attention. We feel fortunate that our approach has yielded positive results for Simi, surpassing our expectations. However, there’s still much to be accomplished to ensure Simi’s independence and ability to lead a fulfilling life beyond our guidance. Recognizing her individual needs and strengths, we remain committed to providing ongoing support and opportunities for her growth and development.

In conclusion, our journey with Simi underscores the importance of personalized care, unwavering dedication, and belief in the potential of every child, regardless of their neurodiversity. While we celebrate Simi’s achievements, we acknowledge the ongoing work ahead to foster her independence and well-being. Let our experience serve as a beacon of hope and inspiration for other parents navigating similar paths, reminding them that with love, perseverance, and a supportive community, remarkable progress is possible.


To be continued………………..


Author
Srinibash Mishra