Augmentative communication

     Preeti was diagnosed with autism at 45. She is the cofounder of C.A.R.E and currently works as a content editor at Nayi Disha. Mother of Rohan, who is also autistic, the two of them are a terrific team when advocating for autism. Sharing the interview in two parts. They both responded to a written questionnaire.

Preeti dixit- Part 1 

 How old were you when you were diagnosed? How do you think seeking a diagnosis helped you?

I was diagnosed with autism at the age of 45. I sought an autism diagnosis after seeing a lot of myself in my son and spending a lifetime feeling different from everyone around me and wondering why I was the way I was. The autism diagnosis finally gave me clarity about myself and my life experiences. My whole life started making sense after finding out that I was autistic. It also brought me a great sense of relief because it made me realize that it wasn’t my fault that I found certain things hard which others found easy. It gave me a sense of freedom because it made me feel that I didn’t have to meet certain expectations to feel good about myself. It gave me confidence to be myself and stop pretending to be someone else to be accepted by society.

2)      You mentioned you find it difficult to ask for accommodations in the workplace. When as a parent you have asked Rohan to put himself first. What can you pin down this hesitancy to?

I think it comes from a lifetime of internalized ableism – thinking that I should be able to do things without asking for help because everyone else is able to. I have always compared myself to my neurotypical peers and felt the need to match them to prove to myself that I’m good enough since I’ve always felt not good enough. Asking for accommodations seems like a huge failure to me. It makes me feel like I’m giving up and accepting that I’m not good enough to do something without needing help. It makes me feel like a failure.

3)     There is veritably a debate on how people diagnosed with autism must be addressed. The person first- language/identity-first language/autistic. What are your views on this? Is excessive importance being placed on vocabulary?

I think it’s a personal choice. I don’t think anyone has the right to dictate how someone should address themselves. I know autistics who prefer to refer to themselves as ‘person with autism’ and I know autistics who prefer to refer to themselves as ‘autistic’. I personally use both interchangeably depending on what feels right in a sentence. For me, it’s not so much the language but the attitude of people towards me and autism that matters. I don’t care how people refer to me as long as they treat me with kindness and respect and accept me for who I am.

4)     Not an invisible disability but an overlooked disability. Could you comment on how you were having social problems prior to diagnosis?

Yes. Everyone I know tells me that they find me different because of the way of I think, speak and behave. My thinking seems quite unique to many, my speaking many a times inappropriate, and my behavior quirky, which, I think, is just a polite way of saying weird. I was teased relentlessly as a teenager because of these differences, so, no, I don’t think autism is an ‘invisible’ disability, because people have been able to make out all my life that I was different. However, autism is an overlooked disability, especially when it’s ‘high-functioning’, because it’s seen as someone being lazy or stupid or arrogant or rude instead of them having a genuine challenge.

5)     You have a unique perspective both as a parent and a neurodivergent yourself. As an mom interacting with other parents and as an autistic person yourself, what differences have you noticed in the attitudes towards autism?

The biggest difference I felt was in noticing how parents and professionals talk about autistic children. It has started feeling extremely dehumanizing and demeaning to hear parents and professionals discussing autistic children’s personal issues in public forums like they were not human beings with feelings but case studies with problems. I wish every parent discussing their child’s issues in public forums would put themselves in their child’s place and imagine what they would feel like if someone was discussing them with others the way they discuss their children. I wish parents would give more thought to their children’s privacy and dignity before talking about them.

Thank you Preeti.