Acceptance all the way 😊

Today is WAAD – World Autism Awareness/Acceptance/Appreciation Day as declared by United Nations [UN] and celebrated all over the world over . UN theme for 2023 is focusing on “Transforming the Narrative ". The world over the push is to move towards acceptance and inclusion of neurodiverse  persons on the Autism Spectrum.

Around the world and on the internet there are live events, rallies, walkathons, cyclothons, podcasts, live casts and webinars. I really appreciate the efforts of the organizers of these events. It takes a lot of love and commitment towards those on the autism spectrum and these drives  go a long way in changing the narrative in terms of awareness about  “What is Autism “ , “What works for Autism “ as well as  recognizing /showcasing  “Autistics” who are breaking the glass ceiling and achieving great heights “. So the “Awareness” and” Appreciation” bits are taken care of quite well in the current times.

Coming to “Acceptance” –

What do we really mean by the term? I googled it [ha-ha] and what came up is :-

 “Acceptance is the ability to see that others have a right to be their own unique persons. That means having a right to their own feelings, thoughts and opinions. When you accept people for who they are, you let go of your desire to change them.”

So, are we really accepting of persons with Autism?

As a parent or a family member what does this mean to me. It has been a struggle for me from when I heard the diagnosis of Nishant at about age 3 to understand what true acceptance really means for me and others so I thought I will write about that today .

I loved my son unconditionally before he was diagnosed and love him unconditionally till today  . I love him not only because he has a twinkle in his eyes , a smile that can take away a million hearts . He has grown from the absolutely adorable chubby “Glaxo” baby to a devilishly handsome hunk towering over me at 6.2. The best part is he loves me back – unconditionally – never judges me , tells me he loves me every day in a zillion ways  - this part is easy to do right ?

I had no issues accepting my child as he was or with the term or the fact that he had a disability  .I had  no issues accepting the parts of him that are different from the “norm”– his sensory differences which include his need to hum or play music all the time , his need to keep walking or moving if not engaged , his obsession with food and smells, his differences in biorhythms which are more tuned to nature and moon cycles  than people .His challenges with communicating through speech , his different ways of socializing, his meltdowns and outbursts  and even his aggression is acceptable to me as an expression of his extreme frustration .I never wanted to change his “core”.

What has been really difficult is to determine has been -  How much do I just “let him be” and how much do I ”train him” to survive in the real world .How do I really help him express himself to the fullest  ? How do I find  spaces outside the home that are accepting of him ? What will true independence mean for him? How do I create support systems that will have the same values as us in the future when perhaps family is  not around ? Who is going to be his inner circle of care and love besides us his family ? To find answers to these questions has been my life’s work and mission- .It has driven whatever I did and do and will do in the future - with him , with myself , the family , the systems around us and the universe.

Acceptance from the secondary circle is happening – in the sense that  those outside the close family are accepting of him – these are people who come in to work at our home on a daily basis, his friends and facilitators @ Amaze, his dentist, doctor , familiar places that we visit like restaurants and shops  etc.  .They know he communicates differently, respect his preferences , “adjust” to his pace and needs and even accept times when he is not able to cope and “does not cooperate” or “has a breakdown /meltdown “.

I realize that building acceptance is an ongoing process – for example if there is a new person in this circle , they are initially very wary – sometimes to the point of being scared and they  literally “avoid” him. As he is not very social in terms of greetings or a conversation  - initially the interactions  are functional and routine – and  communication is very basic like saying "hi" while walking in the community or on a zoom call or "bye" to the teacher ,  house hold help or driver . Then as they observe him more , interacting with us, going about his daily tasks and routine independently they realise they can go further  . For example – he will put off the fan when my mom has to light the lamp , bring water to you if you are coughing , or a tissue if you are tearing up  , suggesting to add garlic or ginger to a dish we are cooking   etc. They see him requesting  things through his AAC  - which may include , food , instructions, actions, music  . And then when they see him communicate with us [his parents] through typing, create one of his beautiful art works , pull out the YouTube recipes of the dish someone  just mentioned in the passing , cycle on the roads for a few kilometers   - then they are amazed !! It takes some time and many interactions for them to get to know there is a “real person in there “ who can actually think and feel.

 While the acceptance  of him as a person is achieved with some ,  many find it difficult to accept his “meltdowns” and “aggression". However if one is in his shoes – with hypersensitivity , hyper awareness of self and the environment , hyper vigilant and yet not able to communicate in detail to all, not able to regulate one’s body or the environment to suit one’s needs , his frustration is understandable isn’t it  . At the same time it is also understandable that no one would willingly want to engage with a person who is aggressive. So there is a bit of a deadlock there which needs to be unraveled .

I accept his meltdowns  as a part of him  - the only part I keep working on is the mode and timing of expression of that frustration – to express it before it becomes explosive and if it does tip over to regulate by taking quiet time off rather than hurt oneself and others  .  Over time he has become  more and more regulated .His meltdowns are only .01 part of his life happen like 2-3 times in a month . When he was a teenager it was 5- 10 times a day so hopefully one day they will go away . 99% of the time you will encounter a "Happy go Lucky " Nishant   and that is who I choose to focus on too.

To summarize and conclude the question to be answered today is …

What can each one of us do towards Autism acceptance?

-      Firstly we need to accept autistics as they are – if they do not want to socialize , if they talk too much , if they are having a mood swing – accept that these are part of who they are and not try to judge them based on that

-       Secondly we need to interact with them based on their interests and routines to build a rapport with them  and communicate with them in a way that they are comfortable and accept their alternate ways of communication.

-   Thirdly we can gently help them to come out of their “ivory tower  “ by helping them experience  the “real world “ through volunteering to  take them /go with them to different places , experience a variety of things and this will help the autistic to bring down their rigidities , sensitivities , learn skills to navigate the “real world”  feel and become “a part of the whole “.

A few years ago when I asked Nishant to type his thoughts for “Autism Awareness Day “ he typed “Why only today ? – I have Autism everyday “. This motivates me to celebrate and accept him and those like him every day for who they really are and work towards creating acceptance in the systems that they are a part of and create systems that are accepting of diversity.

This is important not only for “them” but also for all of “us” .The universe constantly is telling us to move towards an “Interdependence” model versus a “Survival of the Fittest” model.