The American Academy of Neurology (AAN) held its 22nd annual “Neurology on the Hill” (NOH) in late February this year. Over 150 neurologists met with lawmakers in Washington, D.C., to request support for the Safe Step Act and brain research, along with addressing new Medicare cuts.1
Support of the Safe Step Act of 2023
A management strategy established by insurance companies known as “step therapy,” requires a patient to prove “failure” of a cheaper medication before they can gain access to a better, more expensive one.1,2 While step therapy is meant to keep spending down for patients, neurologists point out that it also delays treatment and disregards a patient’s specific circumstances or medical history. Ultimately, in specific situations, step therapy can cause more harm than good. Furthermore, these protocols are only in place because the United States has failed to address already high drug prices.3
Neurologists are currently asking congress to support the Safe Step Act of 2023, which could improve how clinicians use step therapy. It would provide patients with safer, more transparent care by allowing exemptions; if a patient needs higher quality, more expensive care faster, they should be granted immediate access. Neurologists agree that patients should not have to wait for better care.3,4
Addressing Medicare Cuts
Neurologists also asked Congress to speak to the 3.4% cut to the Medicare Physician Fee Schedule that has gone unaddressed since January 1, 2024. Health care providers and patients already face many challenges under the U.S. Medicare payment system, and these cuts only make it harder for neurologists to provide high quality care to patients in need.
Earlier this year, Congress communicated that they would address and fix these cuts by January 19, allowing Medicare reimbursements to be processed. For many neurologists, services delivered prior to cuts being addressed would be paid at a lower rate. However, no deal was reached on January 19, and no temporary fix was provided. If the timeline had gone as it was intended, it is likely neurologists would not face as many issues with reimbursement or withholding claims. However, on March 8, in a budget package passed by Congress, a partial fix to the 3.37% cut to the Medicare Physician Fee Schedule (MPFS) was made. Congress increased the Medicare conversion factor by 1.68%.5 According to the AAN news release, the partial fix is not retroactive and will only be applied to services provided from March 9 through December 31, 2024.
Maintain Funding for NINDS and BRAIN Initiative
Neurologists will continue to ask lawmakers to maintain funding for the National Institute of Neurological Disorders and Stroke (NINDS) and the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative. Both the NINDS and the BRAINS initiative allow neurologists to continuously improve their understanding of the human brain, which ultimately provides patients with better care.1
"
“I keep coming back because I know that NOH, and all forms of AAN advocacy engagement, keeps our place at the table as policy is made. It’s how we best speak up for our patients and our profession.
We reached out to Bruce H. Cohen, MD, FAAN, chair of the AAN’s Advocacy Committee, and Amy K. Guzik, MD, FAAN, member of the AAN’s Advocacy Engagement Subcommittee, to better understand how these laws affect neurologists and their care, and why NOH matters.
Bruce H. Cohen, MD, FAAN
Amy K. Guzik, MD, FAAN
Can you talk about the progress that's been made in advocating for patients and neurologists over the last several years at the AAN's NOH?
Dr Cohen: Advocacy is a long process, and while we don’t always see immediate results from our Capitol Hill visits, the AAN has had some notable successes over the past few years.
As the public health emergency from COVID-19 came to an end, the flexibilities that allowed for broad telehealth adoption were also going to end. In 2020, 2021, and 2022, neurologists asked for those flexibilities to be extended. Congress acted, allowing telehealth flexibilities to continue through December 31, 2024.
Over several years, neurologists have asked their members of Congress to reform prior authorization requirements in Medicare Advantage plans. The Seniors Timely Access to Care Act passed the House in 2022 but was unable to pass the Senate. However, due to the strong, bi-partisan support the bill received, the Centers for Medicare & Medicaid Services (CMS) just recently engaged in rule-making that would implement many of the provisions of the bill, including electronic prior-authorization.
We have also seen a steady increase in funding for neuroscience research, a regular ‘ask’ to legislators by neurologists attending NOH.
Can you share how you got involved with NOH? What keeps you coming back year after year? What would you like your colleagues who are not familiar with NOH know?
Dr Guzik: I first applied for NOH in 2017 in a moment of frustration with the ways in which politics and policies were impacting the care of patients in my communities. I realized that this was a way I could contribute to the discussion and share my expertise and [gain] on the-ground-experience with our legislators. They really want to know how policies are impacting our patients — their constituents — and the impact that legislation is having in the health care system. I keep coming back because I know that NOH, and all forms of AAN advocacy engagement, keeps our place at the table as policy is made. It’s how we best speak up for our patients and our profession.
The 2024 priorities this year are addressing Medicare cuts to support physician practices, the Safe Step Act, and additional funding for research. How were these priorities selected and what about each priority makes it urgent to address in 2024?
Dr Cohen: The priority topics for NOH are decided by the Advocacy committee. This year, because of the timing of NOH and legislative activity, these 3 issues were where we believed neurologists could have the greatest impact.
A fix to the Medicare cuts had not yet been addressed by Congress when neurologists were on Capitol Hill for NOH. It was imperative that legislators heard from neurologists about how the cuts negatively affected their patients and practice. Congress heard us — and many other physician organizations — and passed legislation the week after NOH that reduced the cut by 1.68%.
Step therapy reform had been an active issue on the hill, and it was possible that the Safe Step Act would be included in an upcoming government funding package. Unfortunately, that was not able to come together, but we successfully advocated for additional co-sponsors for the bill.
Finally, Congress was just getting ready to start their process for the 2025 fiscal year funding, so it was an opportune time for neurologists to advocate for additional federal funding for neuroscience research.
The Safe Step Act outlines 5 circumstances that insurers would be required to grant an exception to step-therapy protocols. One of the outstanding challenges is the extensive documentation necessary to show proof to insurers. How can we balance progress — the fact that exceptions are available in the first place — with the additional administrative burdens for neurologists?
Dr Guzik: The important thing to center when addressing Safe Step processes is that we are ensuring patients receive appropriate care in a timely manner. While making exceptions available addresses one barrier to care, if additional administrative burdens are added, patients still aren’t getting the care or treatments they need when they need it. This is particularly critical for patients with neurologic conditions, where delays or lack of access to appropriate medications can mean seizures, progression of brain lesions, additional disability, or even death. Comprehensive legislation needs to address both exceptions to utilization management tools such as step therapy, and clear and efficient request and response processes to get patients the medications they need quickly.
Some clinicians want to advocate for patients but cannot make the trip to NOH. What are some other ways could they help?
Dr Cohen: We encourage AAN members to watch for communications from our advocacy team with opportunities to advocate from home. When important legislation is coming up, the AAN sends out action alerts that allow you to easily write to your members of Congress with the click of a button. NOH is another AAN program where members reach out to the district offices for their members of Congress and meet with them while they are back home for the August district work period. If you want to learn more about how to get involved, visit www.aan.com/advocacy.
Editor’s note: Some responses have been revised for clarity and brevity.
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Lyme Disease Awareness Month runs throughout the month of May. It is a month that helps increase awareness and improve efforts on how to reduce the burden of the disease for patients. Approximately 15% of patients with Lyme disease will develop Lyme neuroborreliosis, or neurologic Lyme disease,1 which is an infectious disease that affects the central nervous system (CNS). It can be challenging for patients with neurologic Lyme disease to be diagnosed, especially if they do not present with typical symptoms.
For Maria Arini Lopez, it took her almost 2 years to be accurately diagnosed with neurologic Lyme disease. Looking back, Lopez considers herself one of the more fortunate patients, as she recalls learning that it can take more than 2 years to receive an official Lyme disease diagnosis. Lopez, who lives in central Maryland, shared that her COVID-19 pandemic hobby — gardening — was most likely the culprit of her infection in the spring of 2021.
She did not experience any of the tell-tale signs of Lyme disease, which includes the “erythema migrans” rash – often characterized by its “bull’s eye” appearance. Lopez admits that her unusual symptoms made it challenging for clinicians to diagnose her with Lyme disease. This led to her extraordinarily complicated diagnostic journey.
To better understand what it’s like to live with neurologic Lyme disease and how clinicians can improve diagnosis and alleviate disease burden for patients, Lopez recounts her experience from her gradual onset of symptoms to receiving an official diagnosis and how the disease has impacted her daily life.
"
If patients present with inexplicable or atypical symptoms and happen to live in a Lyme-endemic region, testing for Lyme infection may be well worth the effort.
Take us through your experience of being diagnosed with neurologic Lyme disease. What did your clinicians do well? Did you have any poor experiences?
Lopez: I had dramatically varied experiences with 8 different clinicians, including a primary care physician (PCP), optometrist, dentist, otolaryngologist, urogynecologist, rheumatologist, neurologist, and an integrative medicine physician.
I first saw my PCP in early July 2021 for an annual physical and full workup. I expressed feeling concerned that something was just not right. I was having trouble sleeping and felt depressed. I was also a lot more fatigued than usual.
The PCP dismissed my basic labs (complete blood count, metabolic panel, and urinalysis) as ‘normal,’ and told me that I was ‘doing okay,’ despite my communicating that I was struggling. My PCP confirmed that I had a urinary tract infection (UTI), another urgent care provider gave me antibiotics, and I was sent on my way.
My eyes and mouth became very dry, to such a degree that I began to think it might be Sjogren syndrome or some other autoimmune disease. Several years ago, I had been diagnosed with dry eye and had been faithfully following the dry eye regimen recommended by my optometrist, but it was no longer effective. I had the lowest grade for the dry eye testing thanks to the regimen I was prescribed. Now, I had confirmed grade 3 staining, despite following the same regimen. Based on all my symptoms, she agreed that something systemic was going on, and that further testing was now necessary.
When I went to my dentist for my biannual cleaning, I told her about the abnormal sensations, or lack thereof in my lips and tongue, as well as the strange itching in my ears, and she acknowledged my suspicion that I might have Sjogren syndrome. She stated that compared with other patients she knew who had Sjogren syndrome, I had more saliva in my mouth, so she did not think it was the likely culprit, but that it might be worth ruling out. She highly recommended that I see an ear, nose, and throat (ENT) doctor.
The ENT doctor who I saw was extremely thorough. She ordered brain magnetic resonance imaging (MRI) to check for anything that may have been affecting the cranial nerves. Although the MRI was negative, it still ruled out certain outcomes. She also diagnosed me with ear eczema and prescribed a steroid cream and steroid ear drops for both ears. These medications helped immensely with the itching and flaking; however, they did not resolve the underlying discomfort, occasional sharp pain, and lack of flexibility in the cartilage of my right ear.
The ENT recommended I see a rheumatologist to completely rule out Sjogren syndrome and other potential autoimmune conditions, such as multiple sclerosis (MS). The rheumatologist was wonderful! She listened carefully to my medical history and immediately ran a series of more in-depth serological tests for a variety of autoimmune and rheumatic conditions that could possibly explain my symptoms. All of these tests, however, were negative.
What were some notable symptoms you were experiencing throughout your diagnostic journey?
Lopez: Cognitive deficits became apparent, including short-term memory loss, severe brain fog and lack of clarity when thinking, slower processing speeds, and impaired executive function. What used to take me 30 minutes to complete now took hours. I no longer worked as a physical therapist, and symptoms were severely impacting my daily function and work as a freelance medical writer.
Other notable symptoms included daily headaches, neck stiffness, intermittent dizziness and vertigo, severe fatigue and flu-like symptoms, mood disturbances, and whole-body flushing similar to hot flashes that would last up to 30 minutes or longer. My right knee joint began to feel swollen and arthritic. As a manual physical therapist, I had worked for a decade in outpatient orthopedic settings with individuals with knee osteoarthritis and rheumatoid arthritis, so I knew what an arthritic knee felt like to the touch.
I finally turned to a neurologist. After listening to the timeline of my symptoms, he thought of 2 potential explanations. I either had a vitamin B12 deficiency that was contributing to what he called “subacute combined degeneration of the spinal cord,” or there was something of a systemic and infectious nature, possibly viral, that was impacting my neurologic function. He prescribed sublingual B12 along with folic acid and B2 supplementation for 3 months to see if my neurologic symptoms improved. If not, he would investigate possibility that it was an infectious disease.
What happened at the 3-month mark?
After 3 months, the supplements had not improved my symptoms, and my health continued to deteriorate. I was preparing to undergo a lip biopsy in January 2022 to see if Sjogren syndrome was the answer. The ENT doctor mentioned that sometimes blood tests did not always effectively rule out Sjogren syndrome, but that a biopsy would be a definitive next step in the diagnostic process.
I read a story about a patient’s experience with an integrative medicine doctor in Northern Virginia. I knew in my gut that I needed to schedule an evaluation with this doctor, or someone else at his practice. On the day I was scheduled for my lip biopsy, I cancelled my appointment and scheduled a virtual telemedicine visit with the integrative medicine specialist. By this time, I was fatigued to the point that traveling any distance took maximal effort.
After listening to my lengthy story, which I had now told upwards of 8 times, the integrative medicine doctor wrote a referral for me to undergo 52 blood tests, including a genetic test called GENIE, as well as the line blot serum tests for Lyme disease. On February 9, 2022, I finally found out that I had an active Lyme infection with Borrelia burgdorferi.
According to LabCorp, diagnosis of Lyme disease using Western blot testing requires positivity of 1 of the following 2 patterns:
An immunoglobulin (Ig) G-positive pattern, in which 5 of the following Borrelia-specific bands (18, 23, 28, 30, 39, 41, 45, 58, 66, and 93) are positive
An IgM-positive pattern, in which 2 of the 3 Borrelia-specific bands (23, 39, 41) are positive
My results indicated an IgM-positive pattern, reading:
B burgdorferi 41kD Ab.IgG
B burgdorferi 39kD Ab.IgM
B burgdorferi 23kD Ab.IgM
Although it may have provided more detailed information to definitively confirm a Lyme neuroborreliosis diagnosis, I never underwent cerebrospinal fluid (CSF) analysis, which experts recommend in addition to serological testing.1,2
What did your clinician do well during your original diagnosis?
The integrative medicine specialist immediately started me on oral doxycycline. He provided me with extensive background information on the Herxheimer response, preparing me for the possibility that I may feel worse before I felt better. He also prescribed a substantial number of oral supplements to help my body better cope with the die-off and detoxification process. I received an email with a detailed explanation as to each supplement’s purpose and how I was to take them.
After 4 months of treatment with antibiotics and supplements, the Lyme bloodwork was now negative, with only one band (Borrelia burgdorferi 41kD Ab.IgG) showing up as positive.
Fast forward to April 2024, although I completed a successful antibiotic, my sensory paresthesia throughout my body began to worsen again. I underwent additional neurologic testing, including nerve conduction velocity and electromyography testing for upper and lower extremities, a brain MRI without contrast, and complete spinal MRIs with and without contrast.
According to my neurologist, although my large nerve fiber axons seemed mostly intact, Lyme infection has the potential to trigger onset of small fiber neuropathy, contributing to my chronic, widespread skin sensory disturbances as well as several autonomic signs and symptoms, including:
inability to sweat normally,
dizziness/vertigo with positional changes,
extreme fatigue,
Raynaud-like symptoms in feet,
loss of appetite and nausea,
heart palpitations,
dry mouth, and
worsening of dry eyes.
These symptoms can flare up again during an acute viral or bacterial infection. A skin biopsy will be necessary to confirm the diagnosis of small fiber neuropathy. Regardless of the final diagnosis, I learned that Lyme disease can affect not only the CNS, but the peripheral nervous system too.
What do you want clinicians to take away from your experience with neurologic Lyme disease?
Active listening to the whole story in its entirety is critical and medical gaslighting happens, even to other health care providers, and it is unacceptable. Our symptoms and stories are valid, and they should not only be believed, but taken seriously to avoid potentially permanent neurologic deficits.
It is understandable that health care providers can be limited by their scope of practice or area of specialization, but they should never be limited in terms of referring their patients to a specialist or provider who they think might be able to find answers and provide solutions. These recommendations often lead the patient in the right direction and at the very least do not leave them hanging without answers or effective treatment. Continuity of care matters.
Also, not every patient will present with a history of a tick bite or an erythema migrans rash. These patients may experience progression of concerning symptoms that can mimic other conditions, complicating accurate diagnosis and enabling an acute, early-stage Lyme infection to transition into a chronic, late-stage infection that pervades multiple body systems, including the central nervous system, joints (especially the knees), and heart.
If patients present with inexplicable or atypical symptoms and happen to live in a Lyme-endemic region, testing for Lyme infection may be well worth the effort.
Thank you to all the health care providers that listen, believe, and actively seek answers without giving up. You give patients like me hope for a better future.
Editor’s Note: This interview was edited for clarity and length.
This is the second article in a 2-part series on Lyme disease. The first article Lyme Neuroborreliosis: Expert Shares Key Insights on Diagnosis, Treatmentis available here.
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Autism spectrum disorder (ASD) is a multifaceted developmental disorder consisting of persistent deficits in social communication and interaction, as well as restricted, repetitive behaviors, interests, and activities.1 Some individuals with ASD learn to use certain behaviors and strategies to minimize or conceal their symptoms so they can be perceived as neurotypical. The term “masking” (also referred to as “camouflaging") is used to describe these coping strategies.1-5
Masking may offer certain benefits to people with ASD, but it also can lead to delayed diagnosis or treatment, and may negatively affect their mental health.6,7 Clinicians need to be able to recognize masking behaviors so they can identify individuals with underlying social communication difficulties.6 This article describes masking by individuals with ASD, and its reasons, implications, and consequences.
"Masking" Behaviors in Autism Spectrum Disorder
The diagnostic criteria for ASD are defined in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR).1 The DSM-5-TR criteria specify that symptoms of ASD must be present in an individual's early developmental period, but they may not become noticeable until social demands exceed one’s limited capacities, or they may be disguised by learned behaviors.1
Individuals with ASD — particularly males — also may have one or more comorbid intellectual developmental disorders.1,3,6 However, individuals with ASD who have minimal or no cognitive impairment may have more subtle displays of their symptoms and may be better able to hide these deficits through masking.1
Behaviors that a person with ASD might use to mask their symptoms include the following3,5,6:
Making and maintaining eye contact despite being uncomfortable doing so;
Rehearsing conversations;
Mimicking others' mannerisms and styles;
Mimicking conversations;
Adjusting the volume of their speech; and
Not standing too close to others.
Individuals with ASD often learn to use masking behaviors over time. They may become adept at looking at others when speaking to them, using scripted phrases during conversations, or mimicking others' facial expressions, gestures, and mannerisms. However, their limitations in social interaction might be revealed when (for example) a person with ASD who has learned to effectively use storytelling to fit in tends to speak in monologues instead of engaging in typical back-and-forth conversation.6
"Masking" vs "Camouflaging"
While many researchers and clinicians use the terms masking and camouflaging interchangeably, others make distinctions between various types of these behaviors. Based on the personal experiences of individuals with ASD, Hull et al developed the Camouflaging Autistic Traits Questionnaire (CAT-Q), a 25-item self-report questionnaire, and administered it to 354 adults with ASD.4 Using a self-report method allowed the participants to describe their own behaviors across various situations.
The findings suggested there are 3 subtypes of camouflaging behaviors: compensation, masking, and assimilation.2,4 Compensation for social deficits related to ASD includes using rehearsed phrases and mimicking the observed mannerisms of others.2,4 Masking autistic traits involves having an intense awareness and monitoring of one’s behavior to present a non-autistic persona to others.2,4 Assimilation is using behavioral techniques to blend in better in uncomfortable social situations without letting others see the discomfort (for example, by forcing oneself to interact via performing and pretending).2,4
Why People with Autism Spectrum Disorder Use "Masking"
In addition to wanting to fit in better and avoid being stigmatized, people with ASD have other reasons for engaging in masking. Cage et al evaluated masking in 262 adults with ASD.7 The participants described the reasons they use masking behaviors, as well as the contexts in which they most often use masking. Based on the responses, Cage et al categorized reasons for masking as conventional (those that served a functional purpose such as at work or school) and relational (those that served to ease everyday social interactions and relationships).7
Conventional reasons include the following7:
To communicate their ideas or work;
To perform well at their job or at school;
To aid working with classmates or colleagues;
To get others to take them, their ideas, or their work seriously;
To get a job;
To reduce awkwardness in social interactions;
To impress their superiors at work or school;
To demonstrate responsibility; and
To get a promotion.
Relational reasons include the following7:
To make friends;
To seem attractive to a potential romantic partner;
To appear likable;
To bond with others;
To fit in with others;
To demonstrate my successes;
To express trustworthiness; and
To express intelligence.
Four reasons did not fit into either category7: "To reduce stigma, stereotypes or discrimination against you"; "Because it is expected of you"; "To find a flat or house to live," and "To make others feel more comfortable."
Participants were also permitted to provide "other" reasons for masking that weren't among the 21 reasons included on the questionnaire. These other reasons were grouped into 5 themes as follows7:
Fitting in and passing in a neurotypical world (most common);
Avoiding retaliation and bullying by others;
Concerns about impression made when not camouflaging;
Habit; and
Internalized stigma (least common).
Adverse Effects of "Masking" in Autism Spectrum Disorder
While individuals with ASD may experience benefits from masking, it also can be detrimental. Masking can delay the diagnosis of ASD or lead to misdiagnosis, thus preventing individuals from receiving prompt, appropriate treatment.2,4 Mental health disorders are common among people with ASD, and masking might make exacerbate these conditions. In their study of theCAT-Q, Hull et al found that masking behaviors were associated with higher levels of social anxiety, anxiety, and depression.4 A greater amount of masking was associated with poorer mental health outcomes.4 Masking also may create problems related to having a sense of identity and experiencing anxiety and stress due to feeling that one cannot be one's "true" self.7
Cage et al examined the experiences of patients who reported “switching” between using masking behavior in certain situations and not using it in others. The levels of stress reported by people who switched were equal to those reported by individuals who frequently used masking, and both groups had higher stress than patients with ASD who used masking less often.7 This suggests that masking in some situations but not others could be as burdensome as masking all of the time.7 Although individuals who switch do not have to face the stress of having to consistently mask their identity, they do have to constantly evaluate the risk of having their autistic identity exposed in each new context.7 This can result in exhaustion and burnout.
"Masking" in Women with Autism Spectrum Disorder
While ASD affects both genders, males are diagnosed more often, and typically earlier in life. These differences in diagnosis might be because in general, females appear to be more likely to use masking strategies, and to use them more effectively.2-4
Cage et al found that women with ASD are more likely than men to engage in masking for conventional reasons, such as in an effort to succeed at work or school.7 Women who use masking have reported that the practice takes extreme cognitive effort and leaves them feeling anxious and exhausted.3,5 Females who use masking may be more aware of their autistic symptoms and the difficulties these symptoms create in social contexts.2 This self-awareness and the stress associated with hiding their symptoms can have a negative mental and emotional impact.2
Conclusion
To fit in better and for other reasons, individuals with ASD may choose to use behavioral strategies to mask their deficits in social communication and interaction. While masking can help patients with ASD in certain areas, such as in engaging in work or school or in forming relationships, it can come at a cost. Masking may delay proper diagnosis of the disorder. It can be physically and mentally exhausting, stressful, and lead to increased anxiety and depression.
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Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects an individual's social interactions and communication.1 In recent decades, the prevalence of ASD has increased from 1 in every 150 children to 1 in every 36.2 While most people with ASD are diagnosed during childhood, individuals with ASD who have subtle symptoms and/or are able to use compensation strategies and coping mechanisms may not receive a diagnosis until adulthood.1 Many of the diagnostic criteria, diagnostic tests, and interventions for ASD emphasize children. Understanding how to recognize, diagnose, and manage ASD in adults is critical to being able to provide optimal care for these patients.
Autism Spectrum Disorder Diagnostic Criteria
As described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR), the diagnostic criteria for ASD include 5 main components1:
Persistent deficits in social communication and social interaction;
Restricted, repetitive patterns of behavior, interests, or activities;
Symptoms must be present in the early developmental period;
Symptoms must cause clinically significant impairment in social, occupational, or other important areas of functioning; and
These disturbances are not better explained by intellectual disability or global developmental delay.
Social Deficits
The social deficits of ASD are categorized as difficulties with social-emotional reciprocity, nonverbal communication, and relationships. Social-emotional reciprocity impairments include having difficulty initiating conversations, being unable to carry on a typical back-and-forth conversation, and not responding in emotionally sensitive or appropriate ways.1 Nonverbal communication deficits include trouble making eye contact or using body language, difficulty using or understanding gestures, and a lack of facial expressions.1 Individuals with ASD may have a lack of interest in or trouble making friends and maintaining friendships. They also may have trouble adjusting their behavior to suite various social contexts.1
Restricted, Repetitive Behaviors
Behaviors that are characteristic of ASD include the following1:
Repetitive motor movements (such as hand flapping or finger flicking), use of objects (such as spinning coins), and speech (such as repeating words and phrases used by others);
Rigid adherence to schedules and resistance to change;
Having highly restricted, fixated interests; and
Exhibiting increased sensitivity to sensory stimuli.
For a patient to meet the criteria for an ASD diagnosis, these symptoms need to have been present since early development.1 Although the ASD symptoms may not become fully evident until later in life, ASD does not first develop in adulthood.1 The ASD diagnostic criteria in DSM-V require that deficits limit or impair a person's everyday functioning, such as the ability to excel in school, maintain a job, or live independently.1
Symptoms of Autism in Adults
Adults with ASD generally have similar signs and symptoms as children. These usually center around poor communication strategies and impaired social functioning. However, adults with ASD may have learned to “mask” or cover up some of those symptoms to fit in and shield themselves from social repercussions associated with ASD. Behaviors that might be used to mask ASD symptoms include the following3,4:
Mimicking others’ mannerisms and styles;
Mimicking small talk;
Altering speech volume;
Rehearsing conversation topics before interacting with others;
Making eye contact despite discomfort doing so; and
Not standing too close to others.
Masking ASD traits may be more prevalent in females than in males.4 One reason more males than females are diagnosed with ASD earlier in life may be that females have more effective masking strategies.4 Masking can help individuals with ASD to succeed in social situations, but it can also lead to anxiety and exhaustion.4
Examples of potential symptoms of ASD in adults include the following3:
Difficulty with expressive communication: Lack of a filter when speaking, flat affect, monotonous tone of voice, difficulty maintaining conversations, avoidance of or particularly intense eye contact, difficulty identifying thoughts/feelings;
Difficulty interpreting communication: Trouble understanding nonverbal cues and others' intentions, thoughts and feelings; and
Restricted interests and behaviors: Insistence on routine and stress when routines are disrupted, intense interest in a particular hobby, object, or area of study.
In terms of repetitive behaviors, adults with ASD often learn to hide hand flapping and other motor movements that are characteristic of younger patients, but they may adapt such behaviors by rubbing their fingers together inside a pocket, tapping their feet, or repetitively rubbing their hands on their thighs.3 In adults, some internal symptoms might not be outwardly apparent, such as social anxiety, social phobia, or exhaustion after social activities3 Adults with ASD also may3:
Have trouble organizing, planning, or maintaining focus;
Irregular sleep patterns; and
Clumsy gait or poor physical coordination.
Diagnosing Autism in Adults
Challenges to accurately diagnosing ASD in an adult include the need to determine if symptoms were present during the patient's early development period, an adult's ability to mask or compensate for ASD symptoms, and the high rates of co-occurring psychiatric and medical disorders, with symptoms overlapping those of ASD.5,6 Prompt diagnosis is important because even in adults, earlier diagnosis is associated with improved quality of life.7 The optimal approach to diagnosing ASD in an adult has not yet been established. A request for evaluation for ASD may be initiated by the patient or by a family member/caregiver. The clinician may need to talk to the patient’s family members to determine if symptoms of ASD have been present since the patient's childhood.8 A referral to a psychiatrist or neuropsychiatrist who specializes in ASD often is necessary because those clinicians are best equipped to make the diagnosis.3,8
The DSM-5-TR diagnostic criteria for ASD are used for both children and adults. However, additional measures may be needed to help establish an accurate diagnosis in an adult patient. Questionnaires used to help clarify an ASD diagnosis in adults include the Autism Spectrum Quotient (AQ), the abridged AQ-10, the Social Responsiveness Scale-Adult version, and the second edition of the Autism Diagnostic Observation Schedule (ADOS-2).6
The ADOS-2 is considered a gold-standard instrument for diagnosing ASD in adults.5 It's a standardized test for measuring communication deficits. It consists of 4 modules that can be administered based on the patient's age; module 4 is intended for adolescents and adults with fully developed speech.5
The ADOS-2 focuses on verbal and nonverbal communication deficits. The test is highly sensitive — it does a good job of detecting ASD in adults who actually have the condition — but there are many false positives, especially if the patient has psychotic symptoms.5
Management of Autism in Adults
Treatment of ASD specifically for adults remains poorly studied, and services for adults with ASD lag far behind those available for children.9 Optimized treatment strategies have not been established.6 Autism spectrum disorder in adulthood presents heterogeneously, and treatment strategies are mostly individually based.
Psychosocial Interventions
Behavioral-based treatments such as social skills training and applied behavior analysis have been used to effectively address the core symptoms of ASD in children, and may be appropriate for adults.4,6 Cognitive-behavior therapy and mindfulness-based therapy approaches have been used with some success for adults with ASD.6 These strategies have been used to improve communication as well as emotional processing to reduce anxiety and stress that arise from societal and social expectations that are not intuitive to understand.4,6 Vocational support such as training in interview skills and supported employment may be beneficial for adults with ASD but research to support a specific vocational strategy is lacking.6
Receiving an ASD diagnosis as an adult can be overwhelming. It is important for adults with ASD to have access to support and resources to understand their condition and feel less isolated. Support groups can be useful for the patient as well as for the family members of an adult who has been recently diagnosed with ASD.3 Online support groups can allow patients to share their experiences without having to face the anxiety of in-person interactions.3
Pharmacotherapy
Other than the antipsychotics aripiprazole and risperidone for treating ASD-associated irritability in children of certain ages, the US Food and Drug Administration has not approved any medications for treating ASD.10 However, people with ASD often also have comorbid psychiatric symptoms and disorders, and receive medication to address these conditions. Specifically, an adult with ASD may benefit from being prescribed the following medications6:
Stimulants or atomoxetine for attention-deficit/hyperactivity disorder;
Antidepressants for anxiety, depression, or obsessive-compulsive disorder;
Mood stabilizers for bipolar disorder; or
Antipsychotics for irritability and impulsivity.
Author Bio
Hannah Actor-Engel, PhD, earned a BS in Neural Science at New York University and her PhD in Neuroscience at the University of Colorado. She is a multidisciplinary neuroscientist who is passionate about scientific communication and improving global health through biomedical research
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