Autism Interview #139 Part 2: Rakshita Shekhar on Self-Diagnosis and Privilege

Rakshita Shekhar is a self-diagnosed teacher of Autistic students in India. Last week she shared her professional background and her journey to figuring out her real passions despite continued failure to obtain an autism diagnosis from medical professionals. This week she explores self-diagnosis, how diagnosis is reserved for a privileged few, and how she has connected with the Autistic community for support.

What specifically do you believe has led to so many healthcare professionals overlooking or dismissing an autism diagnosis in your case?

So the first questions I get asked when I reveal my autism to medical health professionals is, “You look fine. Who said you have Autism?” This means, they don’t know what autism really is. They have only a surface idea because of a lack of training and knowledge.

They also think they’re the experts. They don’t like self-diagnosis because it questions why they have diagnosing authority. Also, they have very little training in lived experiences and the social model of disability. I think they don’t give much importance to non-statistical research. Plus, I think the new DSM criteria have really got them confused. Especially because they have no training. Then, the lack of appropriate tools to diagnose. And the lack of services for Autistic adults.

Most clinicians work with children because of the huge business opportunity. Parents will spend any amounts of money to “cure” or “normalise” their children. I’ve seen families sell ancestral homes, wedding jewels, cars, etc. so they could provide therapy. Parents can be scared into believing that the earlier the intervention, the better the results or costlier the therapist, the better the results. With adults, there’s not as wide of a business scope. Parents and therapists have lesser control over them and therapists don’t know how to work with them or understand what their needs are. So many clinicians prefer to work with children.

Do you think that self-diagnosis of autism should be a temporary or conditional allowance (for example, until the healthcare systems worldwide can “catch up” with autism understanding and adopt the neurodiversity paradigm, or some other condition)? Or should it perpetually be an option?

Hard to answer.

There should be guidelines for self-diagnosis.

More reliable and valid screening tools must be available for free so that people can self diagnose.

Self diagnosis should not have a time limit. It should be a perpetual option.

And services must be made available if a person is self diagnosed.

One of the first services could be to help them get an official diagnosis.

But even as I write this, I have very little hope.

You’ve said in a recent article that “systemic barriers in understanding and identifying autism make diagnosis a privilege, reserved for the lucky few.” Can you describe who has access to this privilege now? 

In no particular order:

People with money. Diagnosis is very very costly. All around the world.

People in certain geographical areas. There are only a handful even in the US and UK who can provide reliable adult diagnosis.

Autistic people who can articulate well. There are many who don’t think in words. They have a very tough time communicating their difficulties.

Adult Men.

Young boys.

People with powerful connections.

People who are in a societally higher position – white people in the U.S., upper caste Hindus in mine.

People with living families – who can accurately recall details from their childhood and tell the clinician.

Referencing the same quote above, can you describe what groups of people are being left behind?

Again intersectionality just worsens everything.

Low income people.

People in most geographical areas of the world.

People with atypical speaking abilities and those with selective mutism.

People who have multiple mental illness, especially PTSD and c-PTSD. All Autistic people live extremely traumatic lives. But those who were systematically denied opportunities to heal are the biggest hit.

Those with substance addiction challenges. It can obscure the Autism beneath.

People of all genders other than cis males.

Older individuals. They have learned to mask for so long that their difficulties are difficult to see even for clinicians.

Indigenous and people of colour for you. People belonging to scheduled castes and scheduled tribes for me.

People who don’t have living family or relatives who can recall details about their childhood and tell the clinician.

In your article on self-diagnosis, you discuss how finding the Autistic community has “resurrected” you and given you the support you needed, which, in turn, improved your relationships with your immediate family. Is this something you would recommend for other NT parents, caregivers, or family members to encourage for their Autistic children? What are some ways you recommend making this connection to the Autistic community? What has worked best for you?

Absolutely important. Birds of the same feather flock together for a reason.

NT parents must encourage their Autistic child to socialise with other Autistic children and adults.

Better? Introduce your children to other Autistic people yourself.

Find them an Autistic adult mentor.

Get Autistic children to read/ watch/ study Autistic literature of various forms: text, music, fine art, etc. – & – these links have a lot of resources.

These links also have names of social media groups where you can join.

Follow some Autistic advocates (mentioned in the links above) on social media. Listen to their stories.

#AskAutistics when in doubt.

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