From Autism Awareness To Acceptance

An 11-year-old boy sits next to his mother, quiet and relaxed. Just an hour ago though, he had an extreme meltdown and a nervous breakdown on his way to school on a bus. Learning about his meltdown, his mother immediately had him come back home and stay with her.

The young boy is an autism patient. 

His mother lets him cool down and feel comfortable. This wasn’t the first time he had gone through a meltdown. But learning for the boy had always been difficult. After some time, his mother asks him how he’s feeling. 

And so, with a typing program, made to make it easier for autism patients to feel comfortable in expressing and learning, the boy typed. He says out of frustration - “I don’t have a place in this world.”

The mother breaks down that day. She and her husband were trying tirelessly to help their child learn, grow and be happy.

That whole night the selfless mother thinks - ‘how can I show hope to my child…’

Autism - The Reality

This anecdote is just one of countless circumstances and difficulties autism patients and their families face. 

April is named Autism Awareness Month, but for many the month needs to move on from awareness and towards Autism Acceptance Month.

One in 54 children have been diagnosed with autism spectrum disorder, according to the CDC. 31% of these children have an intellectual disability. 40% of autism patients are nonverbal and nearly half of them wander or bolt from safety.

More than 60% of children with autism, from ages 6-15, have been bullied.  Nearly half of 25-year-old autism patients have never had a paying job. 

On average autism costs $60,000 per year for special services and necessities on parents of autism patients. Most mothers of autism patients don’t work outside their homes.

Parents of autism patients report having more parenting stress and lower psychological well-being than the general population. Most parents in this study found the stigma associated with autism particularly challenging, with nearly 95% of these parents reporting to experience some form of stigma.

As a matter of fact, the autism patients also face stress, low confidence and well-being primarily due to the expectations and stigma associated with their difficulties.

Why Awareness Isn’t Enough

Manisha Lad, whose 19-year-old son, Akhil’s is an autism patient, was inspired to create the Akhil Autism Foundation, dedicated to helping families of autism patients gain the proper resources, education and research to help treat. 

“We know how hard it was for my husband and me and so we wanted to help others,” Lad says. “We were told to forget about recovery, that he might speak late or never speak and that he will not live an independent life. This was devastating. We went through denial, anger, guilt. Instead of going into depression we right away went into action.”

Lad explained that it took Akhil 10 years before he could read and write and the therapy and learning program was successfully working.

“When we went to mainstream doctors, we didn’t really get hope. Autism is like an ocean,” Lad said. “The journey can be joyful if you put in the hard work. But you have to have a strong positive attitude.”

The reality is that while autism awareness, care and medical research have increased over the past ten years, autism hasn’t really been accepted. 

Let’s take a closer look:

 There is a very subtle yet significant difference between awareness and acceptance. Awareness presents a problem to be solved. Awareness does create a sense of urgency or fear. It provides knowledge and information. It presents and makes one conscious of an issue.

But, awareness doesn’t mean action. 

When one accepts something, his or her mind and heart receive it. When one accepts the reality of a problem or situation, he or she is willing to act upon it. Acceptance comes from a place of understanding the depth and gravity of reality. 

In the case of human beings and our differences, when one is made aware of each other, he or she is just notified of the differences, similarities, issues and personalities. 

But when one has accepted the other, he or she has accepted the individual as they are, though it may make him or her uncomfortable. 

Awareness notifies, but acceptance requires one to move ahead and take action. When one learns to accept everyone as they truly are, there is potential for compassion and genuine care.

For families of autism patients, awareness is clearly not enough because being aware of the situation doesn’t solve any problem. Rather, by accepting the reality as it is, there is potential for progress and happiness.

“Unconditional love and acceptance are the two keys,” Lad says. “Once you’ve embraced that, autism treatment is possible.”

How We Shift Towards Acceptance

Lad admits that initially even she “wanted to fix her child.” But slowly through the process did she realize that they weren’t supposed to fix him, rather they were supposed to transform themselves.

Those dealing with autism directly understand the different difficulties and stories that come along the way - no one individual is the same. And so, treatment may vary. Therefore, the families understand to be patient and to see every small improvement as success.

Autism is a different world for both families who deal with the first time and especially those who don’t face it at all.

 But for Lad, “it starts with acceptance, and presumes with competence. We must see the abilities, hope and understand the individual rather than expecting them to behave in a certain way.”

Acceptance Everywhere

At a deeper level, the world of autism teaches us about life in general. Today, we are satisfied with awareness. In a digital world of social media and constant influx of information, there is no dearth of awareness. Awareness is a necessity, but should everything stop there?

By looking at the world of autism, what families and parents face, and the difficulties along the way, as outsides, one can realize that through acceptance so much is possible. Acceptance allows there to be strength and hope, and willingness to put oneself in another’s shoes. 

The moment we accept each other despite psychological, environmental, religious, color and creed differences, our truest nature, our humanity shines. Pure love for one another shines. 

Or as Lad puts it, “When there is unconditional love and selflessness for each other, things can start moving ahead.”