Reena Anand, a lawyer and former ombudsman specialising in cases involving vulnerable consumers under the Equality Act 2010, faced a unique challenge when advocating for her family. Her eldest child, diagnosed with autism, prompted her to challenge cultural norms and advocate for openness about diagnoses. Anand emphasises the importance of empowering parents and embracing clarity through diagnosis for improved understanding and support. She spoke exclusively to Asian Voice.
Reena, you've navigated complex legal cases and advocated for vulnerable consumers in your career. How did those experiences prepare you for advocating on behalf of your own family, especially regarding your son's autism diagnosis?
My experiences provided me with invaluable communication skills, empathy and resilience. These attributes have been instrumental in advocating for Evy’s needs. Despite my legal background, I was confronted with learning a whole new aspect of the legal system when it came to securing appropriate support and services for Evy and I’ve faced many setbacks. My experiences in consumer advocacy taught me the power of persistence and the importance of tenaciously advocating for those we care about. I’ve always been an activist with a passionate belief in equity, which is why I use my platform to amplify the voices of others.
You mentioned cultural norms that discourage questioning authority and discussing personal struggles openly. How did you reconcile these cultural expectations with your decision to seek a diagnosis and support for your son's autism?
This was very confronting for me but I knew that I could only be the parent I wanted to be and the parent Evy needed me to be if I was prepared to keep the values which served us and drop those that didn’t. I educated and initiated conversations within my family, dispelling damaging myths about autism and fostering understanding of what it really is. I also sought support from parents in a similar situation who role-modelled to me what being a powerful advocate for your autistic child, looked like. I saw that when I parented confidently, others would reciprocate with understanding and acceptance but it wasn’t easy.
Can you share some of the challenges you faced while seeking a diagnosis for your son Evy, and how did you cope with the uncertainty during that time?
The process was long, overwhelming and filled with uncertainty. There were a myriad of professionals I was referred to and I didn’t even know many of these professions existed nor what part they played in helping to build a case to request an autism assessment. Trying to understand the diagnostic criteria, managing emotions and constantly questioning if my parenting was meeting Evy’s needs, were just a few of the obstacles. I sought support from an amazing life coach whom I still work with and joined a local parent support group, whilst also engaging in research to expand my awareness on how to support Evy.
You've highlighted the importance of dialogue and support for parents of autistic children, particularly regarding the involvement of partners in caregiving. How have you and your husband navigated this journey together, and what advice do you have for other parents facing similar situations?
This involved open communication, empathy and understanding. We recognised the importance of being on the same page, attending autism courses together and discussing strategies as a team. This doesn’t mean that we’re always in agreement about our parenting but our foundation means we can discuss our perspectives and reach an outcome with Evy’s best interests at the heart. My advice to other parents is to appreciate that everyone travels this journey at a different pace so we need to be compassionate. Centre your attention on your child’s well-being and be ok with how you parent looks different to others. Overall, prioritise communication.
Reena, you mentioned that obtaining Evy's diagnosis brought both clarity and adjustment to your family's life. Could you elaborate on how the diagnosis impacted your family dynamics and daily routines?
Evy's diagnosis helped us understand his unique needs and strengths which enabled us to create tailored support and interventions. It led to a shift in our family dynamics, fostering greater empathy and acceptance, i.e. Evy used to become distressed if the foods on his plate touched so we honoured this and kept his items separate. Actions like this helped him to feel validated in his home. We adjusted our daily routines, incorporating sensory-friendly strategies to create a more inclusive environment for Evy. This sparked conversations about autism with our extended family members, promoting a supportive network. Evy has positively transformed our lives.
