As the world observed Autism Awareness Day on April 2, it’s important to go beyond awareness and foster acceptance, understanding, and appreciation for the unique abilities and perspectives of autistic individuals, thus paving the way for their active participation in society.
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In an NCERT English lesson, a brown-spotted yellow butterfly flutters about, minding its business. It rests on a red rose now, a lotus leaf then, and on a pink peach flower again, in Sonu’s garden.
Of course, Sonu, as little boys are wont to do, is chasing the butterfly, desperate to capture it. Soon, Sonu finds the butterfly stuck in a web, struggling to break free as a hungry, big, black spider inches menacingly close...Sonu, now the good Samaritan, rescues the butterfly, frees it, and lets it fly away to live happily ever after.
I asked my child, let’s call him C, wasn’t Sonu a good boy? He was right to rescue the butterfly. So kind, right? C’s answer was an emphatic ‘NO!’ C’s mother was horrified and even apologised to me.
But C believes in the natural order of things. The spider needs nourishment; after all, it worked hard to spin a web just to catch its supper. I agree.
I ask C if he likes butterflies. Yes.
“Do you want to be a butterfly?”
“No. Who wants to be chased by pesky little boys?” I agree again.
By the way, did I mention C is an ‘unreliable speaker’? Meaning, he does not speak. He is a non-speaking, not non-verbal, autistic boy of 14. And yes, he prefers to be called autistic. Not the politically correct ‘boy/individual with autism’, ‘divyang’, ‘person with disability’, etc.
Why am I droning on about this? It’s to remind us that non-speaking does not mean non-thinking. Yet, for a boy as smart and unique as C, there are few or no avenues to enter the mainstream.
As the world observed Autism Awareness Day on April 2, it’s important to go beyond awareness and foster acceptance, understanding, and appreciation for the unique abilities and perspectives of autistic individuals, thus paving the way for their active participation in society.
Having spent over a decade working closely with autistic individuals, I’ve come to realise that the journey towards integration into mainstream society isn’t always necessary or beneficial. Instead, embracing individuality and creating spaces tailored to each person’s needs and strengths is necessary. This is where the concept of Person-Centred Planning (PCP) comes into play, which the case of ‘C’ so emphatically demonstrates. The approach is gaining currency in the UK and US and is only now beginning to be heard in India.
PCP, developed in the 1980s in the UK, is a holistic approach that revolves around the individual’s strengths, desires, preferences, and goals. Unlike traditional types of planning which are based on the medical model of disability that assess need, allocate services and make decisions for people, PCP shifts the focus from fitting individuals into preconceived moulds to celebrating their uniqueness and empowering them to lead fulfilling lives on their terms. At its core, PCP recognises that one size does not fit all, and that each person’s journey is unique.
Central to PCP is the idea of collaboration and partnership between the individual, their support network, and professionals from various disciplines. It acknowledges the expertise that individuals and their families possess about their own lives and experiences, valuing their input as equal partners in the planning process. It promotes autonomy, self-determination, and a sense of ownership over one’s life.
One of the key PCP principles is active listening. It entails understanding the individual’s wishes, and concerns, even when they might not be expressed verbally. By employing creative communication techniques and tapping into alternative forms of expression, such as art, music, or technology, practitioners can uncover valuable insights into the individual’s aspirations. Another essential aspect is strength-based assessment. Rather than focusing solely on deficits or challenges, this approach identifies and builds upon the individual’s strengths, interests, and talents.
Furthermore, PCP emphasises the importance of community connections and natural support. It seeks to identify and leverage existing resources, networks, and relationships within the individual’s community to foster inclusion, belonging, and meaningful participation. Whether it’s through involvement in recreational activities, volunteer opportunities, or employment programmes, the goal is to create a supportive environment where individuals can thrive and contribute.
PCP encourages a shift away from rigid, linear planning towards a more fluid and responsive process that evolves in tandem with the individual’s evolving needs, interests, and aspirations.
One of the most profound impacts of PCP is that it challenges societal norms and stereotypes, advocating for the rights and inclusion of all individuals, regardless of their differences.
While we commemorate April as Autism Awareness Month, it is time to start a wider discussion on the principles of PCP, and work towards creating a world where every individual is valued, respected, and allowed to thrive.