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.

 

Understand disability

http://timesofindia.indiatimes.com/…/articlesh…/49026482.cms

As a parent of a person with Autism who exhibits self injurious behavior and aggression at times I am deeply hurt and confused by incidents such as these which I have experienced in different contexts and witnessed as well as heard /read about .

My husband Sriram Narayan and I have done more than our best ,,,we have spent most of our time, money and energies towards rehabilitating him with the best therapies and education /training available wherever we lived . I have trained myself in the field and been successful in establishing alternate ways of communication for him as he does not speak.

We have made lifestyle changes to accommodate his needs and help him pursue his interests. We have been active in advocacy and awareness drives so that the disorder is recognized for what it is and appropriate services are provided .We have always mentored and supported other parents who were with us in this journey Where there were no services to accommodate students like him we have initiated our own innovative solutions .

In spite of this he does have challenging behavior - he is self injurious and sometimes aggressive towards adults who are supervising or facilitating him .While we constantly work on reducing the triggers for such behaviors ,It is not possible to be present 24/7 , always predict triggers or guard him from self injury or guard others from getting hurt !!

As we grow older we feel the need for systems to support and help him ..systems we are trying to create ..however without the help , understanding and support of the larger mainstream community it will be impossible .

This is a mother’s appeal to society in general..to try to understand disability better ,, to accommodate and be more open minded to social diversity . to stop blaming and start joining in .Together perhaps we will have a better chance of making things easier.... first of all for persons with disabilities , secondly their families and caregivers who deal with this on a daily basis and finally society in general .

At this juncture I would also like to acknowledge and thank family members , friends ,professionals who serve our children and some complete strangers who have stood by us and supported us ..hope this will in no way diminish your awesomeness :-)

MESSAGE FOR THE YOUTH :

This seminar has been arranged in the hope that more awareness is created among the youth about Autism and to  kindle the interest of some of you at least  to contribute in some way or the other towards this cause  .I cannot guess how many of you are going to  become special educators or psychologists working in this field .However , I think I can be quite sure that majority of you hope to one day be parents  .Today more and more couples are planning their babies  and very rarely do they just happen to come by!!  I hope what we all   have to say goes some way in trying to change the focus in planned parenting from just financial stability which is the main   criteria today to awareness about the other possibilities and the responsibilities that go with bringing a life into the world .

It has been a year and a half since I first heard the word Autism and today it has become a part of my life .However I wish I had heard of this 5 years earlier when I was planning to have my baby .Let alone Autism , I  was not really thinking or was aware of any other challenges that my baby would face .Not that it would have changed any thing for me but certainly I could have been more aware and alert about all the possibilities and hopefully more prepared for. Four years ago  like any other expectant parent I was quite sure that my bundle of joy would be perfect but in the very ordinary sense .Now I  know he is perfect in the extraordinary sense. However I did go on an emotional roller coaster in the beginning as I was so unprepared for this reality and in doing so I feel I lost some precious time that could have been spent in dealing with the actual issues .

So as future parents I hope that you will not plan when you want your baby only based on your income and bank balance  . Make sure that you will have enough time to spend with your children whether or not they could   have special needs .Make sure you are emotionally ready to deal with  any possibility .

As a parent I feel there is a lot  that needs to be done for this cause and for the reasons of brevity I am listing them down as follows to form the acronym AUTISM   :

A wareness   about the syndrome especially with paediatricians ,   schools , teachers and generally  public awareness of high risk categories and symptoms  .

U nderstanding  of the issues faced by  these children and their  families  and treating the children and the issues  with respect ,care and concern.

T raining of more professionals in various areas such as psychology , special education , speech pathology , sensory integration , occupational therapy , life care  etc. with the special needs of Autistic individuals in mind .

 I nstitutions  that offer  services in the above areas

S upport for the families and professionals working with Autistic individuals .

M oney  the catalyst to actually move forward   

 [One of my early  awareness speeches to college going youth in the years 1999-2000]

UNDERSTANDING AUTISM = A PERSPECTIVE FOR “TYPICAL” KIDS

[Something I wrote about 7-8 years ago to help Nishant's schoolmates understand him …]

Some of you may have seen my son Nishant at school/Hippocampus. He runs up and down the stairs, seems very excited sometimes, very upset at some other time .He may have bumped into you or tried to push you over when you were at the computer or sand pit. You may have wondered why his behavior is so strange? Why he does not talk at all? Why one of his parents is always with him? Why all this when he looks quite a healthy normal boy? Is he just behaving badly?  Is he crazy? Nishant is actually not crazy nor is he badly behaved .He is just very different from all of us .He has a disability called Autism. This disability is very difficult to explain or understand as it affects a lot of areas of functioning in a person.

The first area where these people with Autism are badly hit is the area of speech and communication. They find it difficult to express themselves through language as well as gestures.

Try this out:

Imagine, you are suddenly transported to a new place where the people speak a new language that you do not understand at all and they also do not understand the actions you are making. You will feel quite lost won’t you and some of you may even feel scared.

 Further, imagine, the people in this new land keep thinking that you know their language and actions [gestures] and keep talking to you in their language and making faces and gestures at you. How would you feel? . You may feel anxious that they do not understand you and if this went on for days together you might even be in tears trying to understand them or respond to them .You may try to ignore them, try and convey to them to just leave you alone.

Also, because you are not responding to them, they may start dragging you around the place making you do the things they think you are supposed to do, How would you feel now? You may really not want to do the things they are making you do and you may protest by screaming, crying, having a tantrum or by even trying to hurt them or hurting yourself to get their attention to what you want.

This is exactly how a person with Autism feels – as if he is in a strange land where he does not know the language and the people do not understand him at all. Over time he learns some of the new language but just is able to use it to communicate his basic needs. Some children with Autism do not talk at all – they are mute. Some only repeat whatever they hear – they are said to be echolalic. These are different ways in which they cope with their difficulty with speech and language. Some learn to talk very well and have very good comprehension – that is they understand all that is said but still have difficulties with communication. It has been found that if children with Autism are taught language at an early age like one and a half or two years, they pick up much better than the ones who are taught later.

They also have difficulty understanding social rules .You may have realized that social rules vary from country to country and even within a country it varies from culture to culture and they also have changed over time .For example the Chinese think it is good manners to leave some food on your plate after a meal so that the host thinks you are really full and satisfied and could eat no more. In our culture that is considered rude, you are expected to clean your plate of the last morsel to prove you are happy and satisfied.

People with Autism find all these rules very difficult, as they do not understand their context and relevance .In a sense they behave like they are from another planet. They may stop eating when they are full, take something they like from someone else’s plate, eat with both hands etc. It takes a lot of effort on our part and practice on their part to teach them these rules.  And once they learn the rules, if you want to change them, it is even more difficult for them to accept the change.

Their difficulties in speech, language, communication and understanding of social rules, makes it difficult for them to make friends, hold good conversations, participate in social activities that are unstructured or crowded or new like parties or weddings. They also find it difficult to participate in games involving complex rules like chess and team games like cricket or football. This also contributes to their strange behavior or anxiety at times.

 Sensory integrative deficiencies have also been found with most people with Autism. This means that their senses like hearing, vision, touch, taste and smell may not be functioning well. Some senses are more acute and some are not working too well. Many of them have very good visual skills. Some may close their ears to certain types of noises. Sometimes they cannot use all their senses together  - for example they cannot see and hear together so even watching TV may be something very difficult for them !! This is also one of the reasons why they may not look at you when you are talking as they are trying to hear you and the minute they look at you face with your ever-changing expressions, they may not be able to “hear “ what you are saying. Also when they are looking at something, they may not respond, as they actually do not hear you – you may have to catch their attention by tapping on their shoulder or asking them to look at you.

Their brains are not very organized too. Just imagine if you kept dumping all the information you collect through newspapers, magazines, books, internet, photographs etc into a big box and do not clean or sort this box at all or you keep adding files in your computer in any order without deleting the unwanted files or having folders for each topic. Would it not be difficult to retrieve information when you want something specific? By the time you find the things you need you may get distracted by some other things you see while searching or you may even forget what you are looking for. Something similar happens in the brains of some people with Autism. Their brains do not prune or “cut off” the unwanted information. Hence it is like an overgrown forest where it is easy to get lost !!

Persons with Autism also exhibit some strange behaviors that may “look” bizarre or “crazy”. Some examples are excessive running, flapping their hands, spinning themselves, playing with spit, playing with their eyes – rolling eyes, rocking etc. They may be obsessed with an object or keep talking about a particular topic. These behaviors may arise out of their sensory difficulties.

Also since their lives are quite lonely, given the fact that only a few people interact with them on a daily basis and even these few may not be able to understand them all the time or be with them all the time, they develop means of occupying themselves in what we may perceive as strange ways. People who are in solitary confinement in a prison for years usually either totally switch off or find ways of occupying their body and mind like pacing up and down, jumping in one place or playing games in their minds, having imaginary conversations etc. Something similar happens to persons with Autism.

Persons with Autism sometimes have a particular area where they do very well. These are called “islets of ability” – which means that though they may have severe difficulty in some areas, they may be very good with some other stuff. Some are talented musicians, some are very good artists, some are poets and writers, some beat the computer with their ability to do arithmetical calculations. Some have very good memory – they can remember, names, faces, routes, whole books like the dictionary or the railway time table !!

Some children with Autism are able to go to regular schools and even go to university later in lives and lead independent lives. This depends on the level of Autism they have, language and communication skills, ability to function in a group environment, ability to learn abstract concepts and degree of behavioral problems. Also some are integrated into regular schools with some extra help or support like Nishant. Some others need more specialized help and care and hence go to special schools .In India there is a huge need for more integrated schools as well as special schools as well as respite centers and vocational training centers for people with Autism. This is because the level of awareness about this disorder is still poor.

The cause for Autism is still not known though a lot of research is being done in this area. Scientists and doctors feel that the persons with Autism are born with some genetic tendency to become so and there may be environmental triggers like the diet. Usually the disability is not very apparent at birth. However as the child is about two years old, based on the symptoms, parents and doctor’s can decide that the child has features of Autism .As it appears when the young child is developing, it is called a developmental disorder. It is also called a pervasive disorder as it affects a number of areas of development The degree of difficulty varies from mild to severe for each of the symptoms which makes each person with Autism very different from the other and hence Autism is called a spectrum disorder. Some persons with Autism can also have epilepsy, mental retardation, praxis or motor control problems etc.

Being exposed to a number of people of different ages, cultures and backgrounds and also different environments as well as having a number of things to do, from a young age, helps them to become less and less rigid and cope better and integrate better into the family and community The best way to reach out to a person with Autism is to spend time with him doing something that he likes or is interested. They may not fare well in large groups so it may be best if one or two of you interact with him at a time, initially in the presence of a person who knows how the person with Autism communicates and knows his/her interests and preferences. Over time you can share your interests with him/her and increase his scope of interaction.

Nishant likes swinging, cycling, swimming and trekking and long drives and holiday’s .He also loves animals and nature and trains and likes to read books or watch programs on these subjects. He also loves to see photo albums. He likes to play games on the computer. His favorite video is “The Lion king” .He loves to eat food and thankfully he also likes to work out at the gym so his weight is in check! He also loves hugs and cuddles and tickles and rough play. He likes to listen to music and dance once in a while too. He is also quite affectionate and never forgets a person who has reached out to him in some way or the other. He is good at his school work even though he cannot talk or write, he answers by pointing to his alphabet/number board or by underlining or circling the right answers.

Some children in Nishant’s school have asked me “Why did God make him like this?” It is difficult to answer that question but we can only be sure that since God created him, he must have had a purpose. Moreover as a part of God’s creation he must also be as perfect as any of us. One of the purposes must be to remind us not to take things for granted and to realize how blessed we are to be given the use of all our faculties mentally and physically. The other purpose one can think of is for us to go beyond our own goals and needs and to awaken the goodness that dwells in all our hearts to accept these children as our own and help them to the best of our ability. Probably they are God’s own angels who have volunteered to take on so much suffering in their lives so that we may become better human beings.

Before I stop I would like to share with you a few lines written by Tito who is a fourteen year old Indian boy with Autism. Tito cannot speak but can write poignantly. This is from his first book “Beyond the Silence”.

“A world of such                                                       My story could touch

Can’t it be?                                                                If your heart,

With acceptance and love                                      My hope would get

Not sympathy!                                                           The precious reward! “