Unlocking the spectrum: Navigating adult autism
Although autism is often diagnosed in children, many adults are also being diagnosed, perhaps after years of concerns and confusion about their thoughts and behaviors. Psychiatrist Frank Peters, MD, and psychologist Kimberly Kruse, PsyD, discuss adult autism and how to navigate a diagnosis.
Transcript
Scott Webb: Although autism is often diagnosed in children, many adults are also being diagnosed; perhaps after many years of concerns and confusion about their thoughts and behavior. And joining me today to discuss adult autism and how folks can navigate a diagnosis are Psychiatrist Dr. Frank Peters and Psychologist Dr. Kimberly Kruse, and they’re both with Prisma Health.
This is Flourish, the podcast brought to you by Prisma Health. I’m Scott Webb. So I want to thank you both for joining me today. We’re going to talk about adult autism, unlocking the spectrum, navigating adult autism, and what all of that means. And I’m a very interested party because I don’t know a lot about this. So it’s great to have experts on. Dr. Peters, I’ll start with you. Can you be diagnosed autistic as an adult and who makes that diagnosis?
Frank Peters, MD: Adults can be diagnosed with autism. It can be identified in individuals of any age, including adults, even older adults. The criteria for ASD involve challenges with social communication and restrictive patterns of behavior. Importantly, although autism spectrum disorders can be diagnosed in adults, one of the requirements for the diagnosis is that symptoms are present early in life.
Sometimes diagnosis can be missed until later in life with more mild cases, or if someone grows up in an environment with limited awareness of the disorder. Diagnosing autism typically involves a comprehensive assessment with a team of professionals that can include Psychologists, Psychiatrists, other specialists.
It often includes a detailed developmental history, again, to look back at what things were like in childhood, observing current behavior, and some standardized assessments. The diagnostic process for autism is not a single test, but it’s a thorough evaluation for multiple factors. One thing that’s come up lately and frequently is individuals who will see social media or will see stories about autism and identify with that and self-diagnose.
And so that’s something we really recommend is that if you have concerns about autism, reach out to your primary care doctor or any mental health provider you may already have.
Host: Yeah, you read my mind, because that’s where I was going next, which is, what usually prompts an adult to seek diagnosis or at least reach out to their primary and say, hey, I did a little detective work here, a little self-diagnosis. This kind of sounds like me. What are some of the things that folks would be on the lookout for?
Frank Peters, MD: Autism Spectrum Disorder, if you have it, is going to impact your life in a variety of areas. Folks may have challenges in the workplace, if they’re having issues with communication, social interactions, if they’re having sensitivities with sensory issues, that might seek a diagnosis for accommodations for workplace support.
Some folks might just want to understand themselves a little better. They might be looking for better understanding of their experience to recognize, Autism Spectrum Disorder can really help provide the insights into why you’re having certain strengths, why you’re having certain challenges, and just navigate your life a little more effectively knowing what your strengths and challenges are.
It can provide support services. A formal diagnosis sometimes can help you get support services through the state or through federal agencies. And one thing that’s important as well is folks with autism spectrum disorder often have comorbid psychiatric issues when it comes to things like depression, anxiety, OCD, or ADHD.
So oftentimes we’ll see folks who are coming in for those concerns as well initially, and autism is uncovered in that context.
Host: Yeah, and I feel for a lot of folks, especially when they went undiagnosed or underdiagnosed in childhood, and they, I’m wondering, like, when they find out, as an adult, and they’re diagnosed with autism, is it that sort of light bulb going off moment, Dr. Kruse where they go, Oh, okay, this explains so much about my life, my behavior, those sorts of things?
Dr. Kimberly Kruse: Absolutely. When people get diagnosed with autism, many say that it is a great relief because they’ve gone through their lives, having various difficulties, being different from others, and not understanding why. And currently, in 2023, we’re having the age and the population of individuals that are now adults, who were not fortunate enough to be around when autism was, you know, at least somewhat understood children were not diagnosed with autism back in 1980 for example.
Host: Right. Yeah, there’s so many things I think about. I was born in 68, and I think about things that I never heard as a child, I never heard about peanut allergies, I never heard about autism as a child. So there’s so much has changed and thinking along those lines when we think about the signs in adults; is it different between men and women? Does it present differently?
Dr. Kimberly Kruse: When it comes to men and women, men are four times more likely to be diagnosed with autism than women. And that’s been consistent for many years across a variety of studies. Some studies correlate a level of fetal testosterone with autism spectrum disorder. Of course, many are aware that we still don’t have a very good understanding of the etiology or the reasons why autism presents. Multiple theories, but not a great understanding or a definitive understanding. Regarding women, they’re born within a way that their brain operates somewhat differently. I think we’ve all heard of men are from Mars, Women are from Venus. Some might argue that title, but women are more developed with their language abilities. So when it comes to autism, individuals with autism typically have problems with communication and language.
Women are at somewhat of an advantage just by their neurodiversity. They also have broader interests than men, whereas men typically will be higher up on the spectrum in regard to repetitive behavior or specific interests. Men also follow a routine significantly more than women do in terms of an autistic behavior.
Women are more inhibited, whereas men can be sometimes more aggressive. And of course, I say these things, I think it’s important to understand, this is just in general. Of course, anyone can present with any symptom, and all of these symptoms exist on a spectrum of severity from mild to severe.
Host: And so in comparing and contrasting men and women there, let’s do the same thing between adults and children. Are the signs of autism different between adults and children?
Dr. Kimberly Kruse: This is an interesting topic because when the criteria for autism were set forth in the DSM back in 1980 or so, it was meant as a child diagnosis. And what you must do to understand how does it look in adulthood is extrapolate the diagnostic criteria from the DSM and think about how it would manifest in adulthood. So for children, they might not engage in parallel play or return reflective emotional responses to their mother. They may not want to be held. Whereas in adulthood, that would look different, of course. Most mothers are not holding the adult. Most adults are not on the playground engaging in parallel play. Some are, maybe, but adults are usually experiencing the symptoms that work in relationships, if they can develop relationships and maintain them. You’ll see it in their patterns and their routines. So you have to really take the same criteria and understand how it looks grown up.
Host: Yeah. Are there some conditions that mimic autism? One of the difficulties in diagnosing a lot of things is a lot of things mimic other things. So is that applied to autism?
Dr. Kimberly Kruse: Absolutely. Autism is, it overlaps with so many diagnoses and so many symptoms and behaviors that we would be here for hours, which I don’t think any of your listeners want to sit for hours and listen to me discuss that. Some of the more well known diagnoses that autism might mimic would be ADHD, for example, given the inattention and the hyperactivity piece.
Obsessive compulsive disorder, compulsive handwashing can be seen with autistic individuals, feeling uncomfortable with certain textures and or certain tastes or smells. Any of these sensory deficits or impairments can be found in other diagnoses. Something that people do not think about in terms of how autism might overlap with another diagnosis is traumatic brain injury. And not because of the cognitive impairment part per se, but more of the sensitivity to the environment. With traumatic brain injury, we often see phonophobia, which is fear of sound or sensitivity to sound or photophobia, which is fear of light or sensitivity to light.
Those are some symptoms that might overlap with autism that individuals don’t really think about.
Host: So Dr. Kruse, is it helpful to get an autism diagnosis as an adult?
Dr. Kimberly Kruse: Having a diagnosis can be one of the most cathartic, life changing moments for someone with autism. They arrive at this enormous relief because they understand why they have struggled with so many things in life, relationships, having conversations, reading emotions, and it can often be the beginning almost of a new way of life because they’re able to understand these impairments.
They’re able to hopefully be directed toward treatment and guidance to expand their skill set. So they are able to begin to start having relationships and perform well in the workplace and possibly develop and maintain relationships.
Host: Yeah, it sounds like a diagnosis as an adult just helps to explain a number of things that they’ve been living with and experiencing and been confused by perhaps throughout their lives. Dr. Peters mentioned earlier about the battery of tests that it’s not one single thing. Maybe you could talk a little bit about testing for autism for adults. And what’s that like for the adults?
Dr. Kimberly Kruse: I think we have all gone on the internet and filled out questionnaires or answered questionnaires and immediately decided we have whichever diagnosis the questionnaire corresponds to.
Host: Happens to me with commercials. Every commercial I see, I’m like I have that, obviously.
Dr. Kimberly Kruse: Absolutely. We all end up with various diagnoses if we do these things. I like to point out that the evaluations themselves, it is extremely important to be using empirically sound instruments that are normed amongst populations, professional instruments, that the typical population cannot get their hands on because they’re for trained doctors or practitioners to administer.
And there’s a very specific way these tests must be administered. So the testing usually for adults involves really getting a good understanding of someone’s biopsychosocial history, that sounds like a very fancy, fun word. Really, it’s just speaking to the adult’s lifespan thus far, developmental periods, relationships, and that’s often obtained by someone else.
It’s much easier for someone else to explain these things typically, than the individual being evaluated. And then we can utilize the test that I was referring to before. There’s a test called the ADOS 2, which is the gold standard for autism. And it’s really, the doctor is looking at the individual and observing the interaction, the facial expressions, the patient’s behavior overall and that’s one of the really important parts of the evaluation.
Host: Yeah, just the observation. Dr. Peters, how is autism treated in adults? Is it different than children?
Frank Peters, MD: So, I would say that in children, it’s more often that you’re going to see medications used to mitigate behavioral symptoms. If there’s destructive or aggressive behaviors, there are some medications that are utilized for that. In adults or individuals who have more, more mild symptoms, oftentimes you’re going to see treatment for the co-occurring conditions.
As I mentioned before, individuals with autism often have social anxiety or generalized anxiety. They can have challenges with depression or OCD, and oftentimes you’re going to have medications or psychotherapies to address those.
There’s also things such as social skills training. So you think about social skills groups for children and for adults exists locally in Columbia where folks can reach out and learn more about how to interact in social settings. Occupational therapy is something that’s available for adults as well. And there are things like a support groups and counseling as well.
Host: Yeah, I think we covered this a bit earlier, but what challenges do autistic adults face in the workplace, managing their household, and so on?
Frank Peters, MD: In the workplace, a lot of that’s going to come from the social interactions and challenges that folks can face from social interactions. Folks with autism sometimes might not pick up on the nuance of language or nonverbal cues. And so there could be misunderstandings in the workplace where either, you know, receiving or expressing their feelings could get misconstrued or lead to misunderstandings.
Person with autism can also have some challenges with executive functioning, so organizational skills, time management, multitasking can be a challenge, especially if there’s co-occurring ADHD. And Dr. Kruse was mentioning hyperactivity, hyper reactivity to sensory inputs can be a challenge.
There might be some settings that might not be a great fit from a workplace standpoint for individuals with autism. There are really loud noises, frequent changes in lighting situations. Also, challenges with routine. Individuals with autism tend to really appreciate routine and at times can feel really anxious or overwhelmed if the routine changes.
Workplace scenarios where there’s a frequent change in the day to day routine can be really challenging.
Around the household, obviously managing social relationships can be a challenge and that can also exist in the family environment as well. Transitions and routines are something that are really important for individuals with autism much as in a workplace setting and in the household as well.
Some folks who have more severe autism spectrum disorder can also have challenges when it comes to self-care and independence, and may need some additional supports to ensure that there’s a safe environment for them to live.
Host: Yeah, it’s been really educational. Thank you both for being here today. Dr. Peters, I’m going to finish up, just have you drill down just a bit more, and you mentioned the word support there and how probably important that is, how vital that is for folks diagnosed with autism as adults, maybe you can just go into a little bit more detail and explain that the different options that are available, whether it’s through Prisma Health or other resources.
Frank Peters, MD: From a support standpoint, I think it’s really important for individuals, if they need to reach out and find either a therapist or Psychiatrist who can help navigate the system, help them improve their self-understanding and help them understand why some of these challenges might be existing in their lives and how the diagnosis of autism might explain some of those things.
Typically, either primary care or Psychiatrists or Psychologists can also help them navigate other resources that are available in the community. Here in Columbia, we have the Unumb Center for Autism Spectrum Disorder. That’s a good community resource. There are events that take place for adults with autism such as Coffee Days Out.
There are adult sports leagues for individuals. Things like navigating the DDSN system, the disability and special needs system can be really important when it comes to getting things like social security as well as other resources such as vocational rehabilitation and other educational services.
Host: Yeah. A lot of resources, of course, family, friends medical professionals, mental health professionals, lots to take in. I know that we could stay on much longer than we have, but it’s a good start here today. Just want to thank you both and you both stay well.
Frank Peters, MD: Absolutely. Thank you so much.
Dr. Kimberly Kruse: Thank you.
Host: For more information and other podcasts just like this one, head on over to PrismaHealth.org/Flourish. This has been Flourish, a podcast brought to you by Prisma Health. I’m Scott Webb. Stay well.
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