Redefining Happiness, and Building Bridges from Within
This real life story draws many lessons for caregivers and autistic adults
- click this URL link, or copy paste to your internet browser, to read the story:https://www.washingtonpost.com/lifestyle/2019/10/16/how-listening-autistic-adults-helped-me-understand-support-my-son/
LESSON 1: Change Our Perceptions
The author states "now know that the despair was caused more by my exposure to negative stereotypes about disability, and less by my child’s reality. "
Don't keep viewing yourself (as an autistic or a parent) or your child as a defect or an unfortunate event. Sometimes such views stem more from society-created stereotypes, discrimination, skewed perceptions etc. in relation to your child's autism, and not just autism in and of itself.
By Design, not Defect.
Bright, not Broken
Blessing, not Burden
LESSON 2: Walked the Tough Road? Leave a Trail and Lead Others Who Come After You
Many of the autistic adults this parent spoke to were able to help "warn (her) about avoidable mistakes", which they themselves made.
Some of us autistic adults walked the tough road due to lack of awareness, knowledge and support back then. We learnt (and are still learning) things the hard way. Few of us may have gotten late diagnosis.
Painful as it is, it is these hardships which has now enabled us to light the way ahead for the younger autistics (and their parents) from our own firsthand experiences. Instead of resenting the fact that we didn't have such support system and paths with a lead for us to follow, how about we be the ones to now create for others, what we once did not have, in the autism community?
I also urge the parents to take time to listen to us.
As this parent discovered, it was listening to the insights of these autistic adults which benefited her, which she listens with "ever-increasing gratitude".
Don't overlook the rich insights you can receive from us... no matter how well you may know your child. There might still be a lot about your child you don't know (or cannot fully understand) like there is a lot about me my parents don't know or don't understand, even until today.
It is nice to hear from people who have had similar experiences, as the saying goes, hear it from the horse's mouth
LESSON 3: Redefining Happiness
This parent shared how she "used to get hung up on my son’s passion for... ", and has ever since learned to "redefine what happiness looks like".
People tend to define happiness in the conventional way the majority/mainstream society does, and unknowingly impose it on autistics. What if our definition of happiness is different? Even for Neurotypicals, what if you enjoy reading your favourite magazine at home but I impose a different definition on you and force you to watch a good movie with me just because I enjoy movies (but you don't), which deprives you of that time to read your magazine. How does that make you feel?
The key to making your child happy is his own custom definition of happiness, not the world's definition of happiness
Find out what makes your autistic child happy and leverage on that or let him have it in his life whenever/wherever possible/appropriate. A real life example was how an autistic boy who was sitting there watching others play, or an autistic girl who was reading books in the library. Each of their teachers encouraged them to play, telling them it is so that they can be happy. They told their teachers not to impose their definition of happiness on them. They were happy just watching or reading.
Many of my Neurotypical peers like playing sports and games, but that is not what makes me happy, so I don't join them (back then though, also because I was being ostracized).
At a recent CSR event where I was among the volunteers hosting autistic students, I made it a point to constantly ask them which game they want to play, whether they are hungry, which activity they were interested in etc. I don't assume which activities make them happy nor assume they will be happy with the food to eat .
Dr Peter Vermeulen, a Senior Lecturer at Autisme Centraal, Belgium, touched on happiness during his keynote speech at the Asia Pacific Autism Conference (APAC 2019) held on 20th to 22nd June 2019. He also urges us to consider this paradigm shift: instead of trying to reduce autistic behaviours (which can make it hard for autistics thus leading to stress, even depression), try increasing happiness first (such as through environmental changes), then they may nautrally exhibit less autistic behaviours.
Seek not to solely change your autistic child nor normalise him, but seek also to make environmental changes to make life easier and happier for him. Some fish thrive better in salt water, others in fresh water. Put them into the other type of water and they will have a hard time surviving.
LESSON 4: Embrace Your "New Kind of Normal"
Having an autistic child no doubt changes the way your "normal" day to day life will be. In this parent's example, her house is filled with all kinds of things to accommodate the child, and family holidays need to be split to cater to each child. Instead of seeing it as sacrifices, she learned to see it as their reality, and she accepts it, and more importantly, pull together to build their unique brand of happiness.
LESSON 5: Listen to Each Other and Build Bridges from Within
To BOTH the parents and autistic adults, listen to each other!
Parents, away with the mentality/perception of "you don't know my child", "you are more vocal than my child". As this parent discovered, you may realise we are more similar to your child than you realise/imagine... for in spite of (or even because of) the diverse experiences, interests, skills and personalities of us autistics no matter where we live on the spectrum, the experiences and emotions we have, in its "rawest" form, have many similarities and common ground. Also, even if you perceive that we are more vocal, expressive, etc. compared to your child, remember that we may have gone through a lot of tough stuff over the years, perhaps like what you and your child are going through now, albeit not exactly the same (but no two autistics, no two human beings, have the EXACT 100% identical life experience anyway)
Autistic adults, enough of the "you are ignorant" accusation of parents. What is important is their genuine learning spirit, and love for the child. They make mistakes, but so do every human. Share our insights with them with a warm and gentle heart and not an antagonistic spirit.
Often, the tensions arise when either camp of people feels unheard, judged or misunderstood by the other. But it doesn't have to be that way.
We can learn to communicate with each other in a better way, and to listen to each other with a more open mind, compassion, sincerity, empathy and the like. After all, we want the same thing (a happy and rewarding life for autistics). We may have come from different ships, but we are all in the same boat.
We have so much to offer each other and it will do all of us much good if we learn to understand each other's point of view and see how the different views can offer mutual benefit, instead of going to war and being focused on who "wins"
A house divided on its own cannot stand. To gain greater acceptance with the wider society, let us first build bridges from with-IN, before we can so from with-OUT.
As we build bridges and continue to explore the depths of the autism spectrum and the many lives touched by it, we can find much richness and goodness in our common bond... autistics, caregivers and professionals alike.
Build bridges, friendships, partnerships and the like within the autism community across various stakeholders. Band together, collaborate... only then can we travel far together, for "Alone we can do so little, TOGETHER we can do SO MUCH" (Helen Keller)