Isolation is a critical issue for Autistic adults

The pervasive loneliness of Autism https://time.com/6551520/loneliness-autism-essay/

Sometimes, an article gets published that impacts me deeply on a personal level. Such is the case with this amazing article in Time magazine from the brilliant Hari Srinivasan

It opens: "Loneliness has long been a pervasive issue within the disability community, growing even more pronounced as individuals age...Ironically, relentlessly pursuing a disabled person’s greatest sign of “success”—independence—might be the very thing that’s setting many Autistics on a path towards profound loneliness and fragmented relationships."

Isolation is a critical issue for Autistic adults. It is often exacerbated by the pressure to "become an adult" and "live independently". Yet, Autistic individuals often find that their families are their only real support, but that societal norms stigmatize adults living with family.

Independence is a myth we are taught to chase in America when what we should be seeking to teach is interdependence.

No human lives independently. We all rely on other humans to get our needs and wants met. Whether we are talking about hiring an accountant to do your taxes, dropping your car off for an oil change, or having a person to assist with meal planning, it is all interdependence.

While striving for autonomy in adulthood is vital, it's also crucial to balance it with support and meaningful relationships with others. Acknowledging our innately human interdependent nature is essential if we intend to foster a more inclusive society for Autistics.

I highly recommend reading Hari's full piece below.

Consequences of a fixed message

The Pervasive Loneliness of Autism https://time.com/6551520/loneliness-autism-essay/

As always, I am so grateful for Hari’s wisdom and insights. As someone who stands in front of thousands of people a year, and talks about the need to foster and support independence, I am bowled over by the very real consequence of that fixed message. The singular goal of independence can, along with other factors, lead to the experience of profound loneliness. Rather than a focus on independence, the true focus should be on balance. Hari said it best with “But it’s also essential to recognize that advocating for meaningful connections and a more balanced approach to independence does not diminish the importance of autonomy. Striking a balance between independence and support is crucial for the well-being of autistic individuals.” Thank you, Hari Srinivasan, for yet another profound learning opportunity.

 

Strength Spotting Saturday

I was spotlighted along with some rather kind words by an org today on social media 

It's Strength Spotting Saturday, and today we're spotlighting Hari Srinivasan!

🌟Perspective - Mr. Srinivasan graciously shares his view of the world in a manner that is accessible to the general public. His contributions to the widely distributed Time Magazine increase the understanding and awareness of his lived experience.

🌟Perseverance - The achievements in scholarship demonstrated by Mr. Srinivasan are demonstrative of his perseverance. Honors in his undergraduate program at the University of California Berkeley and entrance into the prestigious neuroscience program at Vanderbilt University as a doctoral candidate are just a few of his achievements in higher education.

🌟Judgment - Mr. Srinivasan serves in many advisory roles, including membership of the Interagency Autism Coordinating Committee, which advises federal policy and priorities, and on the Council of Autistics Advisors for the Autism Society of America. In these roles, he adeptly views different opinions and weighs the evidence to guide decision-making for the betterment of the autism community.

Societal Ideal of Independence

Independence = overrated! So many great points @TIME piece @HariSri108 

'The societal ideal of independent living for [#autistic people] translates to living apart from...family + being surrounded instead by a series of paid support staff' 

https://time.com/6551520/loneliness-autism-essay/

https://www.dailycal.org/2018/04/05/access-ramp-volunteering

 

Ed Roberts Day

Ed Roberts Day, celebrated annually on January 23rd, marks a significant moment to reflect on the extraordinary life and enduring legacy of a trailblazer in disability rights. Ed Roberts, an alumnus of the University of California, Berkeley, was not just a figurehead but a formidable force in the movement for the rights and recognition of people with disabilities.

Born in 1939, Roberts' journey into activism began with his personal battle with polio at the age of 14. Despite being paralyzed from the neck down and dependent on a respirator, his indomitable spirit led him to challenge societal norms and barriers. His admission to UC Berkeley in 1962 marked the beginning of a transformative era, both for himself and for the university.

At Berkeley, a place known for its spirit of revolution and change, Roberts ignited a movement that would reshape the landscape of disability rights. He became the first student with severe disabilities to attend the university, living in Cowell Hospital (now the site of Haas Business School) since the dorms were not accessible. This experience was not just a testament to his resilience, but also a stark indicator of the need for systemic change.

Roberts' most notable accomplishment was the founding of the Physically Disabled Students Program (PDSP), the first program of its kind in the country. This initiative, which began as a small, student-led effort, evolved into the Disabled Students' Program, a model replicated by universities and colleges nationwide. The program not only provided essential services but also fostered a community and a sense of belonging among disabled students, offering academic guidance, peer support, and advocacy.

Beyond Berkeley, Roberts' impact continued to grow. He became a key figure in the independent living movement, advocating for policies and practices that promoted autonomy and equality for people with disabilities. His work culminated in the development of the Berkeley Center for Independent Living, a groundbreaking model for disability services and advocacy.

Ed Roberts' life is a beacon of inspiration, demonstrating the power of resilience, advocacy, and the relentless pursuit of equality. His legacy at UC Berkeley and beyond continues to resonate, reminding us of our collective responsibility to build a more inclusive and equitable world. Ed Roberts Day is not just a commemoration but a call to action, a day to honor a visionary leader and to recommit ourselves to the principles he championed.

A cycle of dependency

Congratulations. Hari. This is such a moving piece that sheds light on the unspoken experience many endure. I love how you conclude with "...in actuality, all humans live in a cycle of dependency. The perceived division between independence and dependence is a flawed notion." 

https://time.com/6551520/loneliness-autism-essay/

9 inches of snow

This is really crazy. Nashville got 9 inches of snow (normal is 1-2 inches). 

To add to the drama was that we were traveling back from India and the house was inaccessible as its on a steep hill. The innocent looking snow clad road is actually slick ice so any cars attempting to go up would just slide downhill. 

The short of it. Had to park at the bottom of the hill walk up the hill dragging our luggage with the help of our super nice neighbor Josh. 

But walking up not a pleasant experience and bitter cold. Why does the city not clear the side streets as well as the main roads. 

 

 

An incisive perspective

https://time.com/6551520/loneliness-autism-essay/

"This piece really hit home Hari. Thank you for writing it and offering such a thoughtful, nuanced, and incisive perspective. Gives us a lot to think about regarding how to achieve more balance."

A Cycle of Dependency

 The Pervasive Loneliness of Autism: https://time.com/6551520/loneliness-autism-essay/

As an educator and transition specialist for individuals on the Autism spectrum,this article was eye opening and SO informative. A perspective that needs to be addressed.

The last paragraph summarizes it-“…all humans live in a cycle of dependency. The perceived division between independence and dependence is a flawed notion. Embracing this truth could pave the way for a more inclusive society that transcends the limitations of societal norms and helps us build better support systems that result in enduring human social connections for people with autism.”

A necessary shift from giving our ASD population needed independent- at what cost? This independence, which could create isolation-to true relationships of family and friends not support staff. Instead, finding ways to create community with people that have common interests. And keeping family close.

Thank you Hari Srinivasan for this insight. We can all grow from knowledge.

List of Publications: https://uniquelyhari.blogspot.com/p/published-work.html

The Pervasive Loneliness of Autism

The Pervasive Loneliness of Autism: https://time.com/6551520/loneliness-autism-essay/

Hari Srinivasan , Neuroscience PhD Candidate and likely one of the most powerful and inspiring advocates for autistic and disabled people, writes a truly powerful essay in Time magazine this week.

Please read.

He makes the connection between US Surgeon General Vivek Murthy ‘s highlighting of the loneliness epidemic and the lived experience of autistic people.

As a physician, whose dedicated my career to innovating on the systems we use to treat adults and children with complex conditions, I can see much of what Hari is pointing to in the great number of inspiring people whose disabilities require extensive hands-on support I’ve work with

The loneliness epidemic

And its particular relationship with physical and cognitive disability
In both young people
And older people

Also has a relationship to healthcare worker burnout.

Hari states :

“As someone who has autism, I’ve experienced a revolving door of over a 100 support staff—and I plan on living for many more years. The reality is that any person with autism is a client, a case, a job to the people they tend to interact with most—and that’s not the same as family or friends.”

As a professional member and leader in the types of organizations that serve as that “revolving door of support support”, this statement stings.

But…

He’s right.

In the end, we paid caregivers who are employed by outside agencies, while we are essential for the dignity, safety, and comfort of people affected by disability

We can never truly replace the universal need for stable and supportive family and caring community.

Yet, those of us attracted to the caring professions, especially those of us focused on people with disabilities and complex conditions,

Chose caring professions because

We Care.

Yet we must have the humility to understand the role we must play in our clients’ lives,

we can’t,
no matter how much we long to,
replace true caring local communities and family structures

Seeking to do so only worsens our burnout as professionals and adds to this “ pervasive loneliness “ of disabled individuals

We can’t medicalize all society’s problems
Even if many of society’s problems have significant health consequences.

Loneliness is a real issue
Epidemic levels of crisis
With real health consequences

But it has its roots in the weakening of social ties within local communities and the families those local communities support

And the macroeconomic and microeconomic and cultural circumstances that affect those social bonds

Public policy
Cultural movements
And entrepreneurial enterprises

Outside of healthcare

That strengthen local communities
Enable families to stay close
And strongly affirm the inclusion of people who are disabled
physically, cognitively, or behaviorally
at whatever age

Are what is needed to address this,

Not just placing another social problem on the backs of burnt out healthcare workers

#disability #autism #loneliness #healthcareinnovation #burnout

Full list of my publications: https://uniquelyhari.blogspot.com/p/published-work.html

How Reasonable are Reasonable Accommodations at Work

https://www.psychologytoday.com/us/blog/giving-voice/202410/how-reasonable-are-reasonable-accommodations-at-work

Autistic employees with greater or more complex accommodation needs may be viewed as burdensome and resource-intensive, leading to exclusion from hiring, promotions, or even being the first to be laid off.

 

Metaphorical Mic Drop!

https://time.com/6551520/loneliness-autism-essay/

Hari what a wonderful piece in Time - every paragraph was a metaphorical mic drop!

Really good points - you put into words a lot of what I’ve been thinking about as a self advocate and as a clinician

My other articles in Time: https://time.com/author/hari-srinivasan/

My other publications