How Adult Autism Goes Undetected

- When I was growing up, I had an idea that I was different that I was like, oh, this is just how everyone goes through the world and I'm just not as good at it.

Well, it turns out other people don't actually do that which explains a lot.

- That's Kip Chow and they represent a growing population of individuals that are diagnosed with autism or autism spectrum disorder, ASD as an adult.

Typically, autism is thought of as a developmental disorder that appears in children.

In the early 2000s, the CDC reported that one in 158 year-old children had an autism diagnosis but by 2018, that number increased to one in 44.

However, that's one in 44 children, that doesn't necessarily represent those over the age of 18.

So you're an adult and you think you're autistic.

What are your options and where do you go for support?

(bright music) First, let's talk a little bit about the language we use to describe autism.

Raise your hand if you've seen or heard someone say I'm a little on the spectrum.

Or maybe you've heard someone say, yes, they are autistic but they are high functioning.

Well, you might not know, and I'm here to tell you but most of this language is pretty offensive to those that are autistic.

Terms like being a little bit on the spectrum or high functioning or low functioning devalue the autistic experience and create assumptions about the person.

Using a label like high functioning implies certain assumptions about a person's disability that are not wholly accurate.

One person might present with fine motor skills and have less trouble communicating, but still struggles with sensory input or relationships or even employment.

- Autism or being autistic is not about I guess disorder as you would probably get from the medical term, which is autism spectrum disorder.

But instead, it's more about a specific way of seeing and interacting with the world which is different from most people.

- Folks who are autistic may experience life in a much more intense way.

They may prefer things to be more expected with less surprises.

They may have more difficulty doing things simultaneously like listening and looking and attending to what's happening, and at times they may have difficulty with communication in the way that others do.

But what's really important with when we talk about autism is to remember that a lot of these are differences, not necessarily deficits for every person with the diagnosis.

- Let's look at how autism spectrum disorder might appear on a wheel as opposed to a left right scale.

And let's place some markers that represent the diagnostic observations that are used to screen someone for autism.

Things like social awareness, sensory processing, and motor skills are located at different points on the wheel.

But since the dawn of time we know that no two people are alike.

Same thing applies here.

One individual might present with arm flapping but they are verbal and sometimes miss social cues while another might fidget and struggles with sensory processing such as bright lights or loud noises, and is non-verbal.

That's because the spectrum is an umbrella term that covers a large array of neurological conditions, including autism, ADHD and Asperger's syndrome that are so closely related that they are hard to define individually.

Sometimes this is referred to as neurodiversity or being neurodivergent.

- Neurodiversity is a concept was developed by a social worker and an autism advocate named Judy Singer.

She talked about it as an allegory with biodiversity.

So in any healthy ecosystem we need to have a huge diversity of plants and animals and species to make that ecosystem work well that's normal and as humans, the concept of neurodiversity is the same so that autistic people and ADHD people and other diagnoses that would fit under that umbrella are all part of the same community rather than there is a norm.

And then if you're divergent the goal is to fix and return to the norm.

- This is where the challenge begins for individuals that were misdiagnosed or were not screened for autism during childhood, they went through life into adulthood, forced to conform to societal norms that did not feel natural to them.

This is called masking.

- For me, masking is a lot about, we'll say it's a game.

There's a game going on and everyone's playing it and everyone knows the rules but there isn't actually a manual.

They just know it and I don't get one.

So I kind of had to learn from observation from messing up essentially and picking up all those rules and integrating them into myself in a way that isn't necessarily natural.

I do mask because, well, I kind of have to to be able to interact in the world in the way that I want to, whether at work or at school.

In some ways I don't do it as much, but I still have to go in order to do the things that I want to do.

- Adults that have similar experiences to Kip might not have the same pathways to a diagnosis.

Girls are already at a disadvantage during the assessment process.

According to a recent study, the theory that the ratio of males to females with ASD is four to one might be a bit off.

The study suggests that a closer estimate is a three to four ratio with 80% of females remaining undiagnosed at age 18 due to the fact that girls are more likely to camouflage in order to meet societal norms.

But what if you're from an underrepresented demographic as well?

Maybe English isn't your first language or you're located in a rural setting that doesn't have access to private clinicians that are qualified.

That's the thing, qualified to test for autism.

Then what?

- So our concept right now of what does autism look like is very white male, Eurocentric.

We need to change that.

One of the things we see quite a bit with young particularly people socialized as male who come from other cultures is eye contact in particular is a completely different concept in many parts of the world.

So they could be coded as having bad or low eye contact when that is actually the cultural norm for their area.

So this is an important piece for assessment is assessors need to be constantly training in de colonialism, in cultural sensitivity and cultural awareness, and clients should know whether assessors have had that training.

- For those that have gone through life not recognizing the signs of autism, they might think they are too old for a diagnosis or what's even the point.

However, a diagnosis opens up many support systems that you might not be aware of.

- There are two main benefits that I talk to clients about.

The first and most important is adults and here we're talking about adults who are able to use verbal language.

We don't wanna forget that the autism spectrum is incredibly wide and many autistic adults have additional disabilities and we're talking about them as well, but in this case, self-understanding is an incredibly powerful thing that can come out of an assessment to finally understand that there was nothing wrong with me all along and that I was right when I felt different from others.

That knowledge itself can help alleviate and treat other symptoms of depression and anxiety.

The second thing that you get access to is protections under the Americans with Disabilities Act.

So perhaps you are someone who works as a stock clerk in a very busy supermarket, and the assessment identifies that you are hypersensitive to noise.

An assessment can give you the legal rights to compel your employer to allow you to wear hearing protection, or perhaps if you're in college, to take a test in a separate room and it makes it more difficult for an employer to fire you for manifestations of your disability.

- Even with access to the clinicians that can provide an assessment there's no guarantee of a diagnosis due to the high demand for testing.

There can be a wait list.

Then if health insurance doesn't cover the cost of the test it can cost several thousand dollars out of pocket and again, the diagnosis could be missed entirely.

- Unfortunately, we have at my center I'm the only diagnostician right now and my wait list is a year long, and that's not good and we are working on that but we need so many more clinicians in the area.

Part of the reason that the wait list is so long is good and that is that we refuse to let anyone assess if they don't have the background.

So we're working on finding some folks that we can train additionally but this is a nationwide problem.

There is a shortage of fully trained mental health clinicians.

If I was a person wanting an autism assessment I would go ahead and get myself on as many wait lists as I can because sometimes those wait lists do clear up quickly, and if you're on one, I would check in about once a month and see where you are in that list.

- All right, now y'all, we done uncovered it all but understanding why the diagnostic system has inherent flaws is only part of the equation.

The second part is how we talk about autism.

- Being autistic isn't something that needs to be treated as much as it's about being able to understand yourself and find ways to better cope with the demands of society.

Like for some people, they go to counseling.

For some people, they find community support and that's enough for them.

For some people there may be medications that help alleviate some of the manifestations of what being autistic looks like.

Like many autistic people are anxious, they have anxiety so maybe medication for that will help.

I think if someone is an adult and says they're autistic and doesn't have a professional diagnosis I don't think that makes them less valid.

I think it means that they were overlooked and that in a way the medical system failed them in a way and that's not on them to justify themselves to anyone but more about considering how systems overlook people not because they did anything wrong but just because systems tend to be oppressive and tend to discriminate.

- There are so many times in my career where cultural norms played a huge role in how I treated a patient.

Like when caring for a patient from China they may be more likely to under report pain or even in Black women they may be reported as being irritable or non-compliant when really they are really just depressed, anxious and feeling insecure about their care.

This episode really educated me on ways that I can apply neurodiversity to my practice.

Something as simple as turning down the lights or closing the door could really greatly improve someone's security in their care and now I have some insight to refer them to a clinician that can help.

Check out our notes in the description to help you or someone you know find information on finding someone that can provide an assessment for autism and support groups in your community.

Let us know in the comments how this video challenged your understanding of autism.

Let's talk about it, see you in the comments, and always, always, thanks for watching.

See you next time on PBS Vitals.