Six weeks ago, the autistic community sounded the alarm when U.S. Health and Human Services Secretary Robert F. Kennedy, Jr., called autism a “preventable disease” caused by unknown “environmental toxins,” and vowed to root out its causes within six months. Shortly thereafter, the head of the National Institutes of Health (NIH) announced that it would begin amassing private medical records from commercial and federal databases, including those operated by the Centers for Medicare and Medicaid Services (CMS), to provide health data for Kennedy’s proposed autism study, according to NPR.

This proposed NIH-CMS database would reportedly include information from wearable health devices, insurance claims, and online medical records. An NIH official said, “The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies.”

Kennedy initially said the NIH-CMS database would fuel a series of research studies to “identify precisely what the environmental toxins are that are causing” autism by September; he recently pushed back that date by six months or more. Meanwhile, autism scientists, medical practitioners, and advocates have expressed concern and even outrage over Kennedy’s apparent dismissal of existing autism research and the recent resignation of a top NIH scientist who accused the Kennedy-run organization of research censorship.

Though Kennedy insists the database is not an “autism registry,” privacy concerns remain high. Currently, autism databases do exist in seven U.S. states, including Delaware, Indiana, North Dakota, New Jersey, Rhode Island, Utah, and West Virginia. However, rules of consent for these state databases set them apart from the NIH-CMS database, which reportedly pulls in medical information from insurance claims and medical records without first securing patient consent.

In its May 22 MAHA Report, Kennedy’s MAHA Commission confirmed its plans to “expand the NIH-CMS autism data initiative into a broader, secure system linking claims, EHRs, and environmental inputs to study childhood chronic diseases.” Details remain unclear, however ADDitude recently asked readers to share their thoughts and reactions to this news.

Overall, a majority of the 194 respondents expressed privacy concerns, citing possible violations of HIPAA laws in relation to the NIH-CMS database. They also remained largely unconvinced that this database could unlock answers about the causes of autism within 6 to 12 months, considering that global researchers have been working to solve that puzzle for decades.

Some respondents reported experience with state-level databases and expressed a desire for the NIH to institute a nationwide support network for autistic people and their families, but most expressed skepticism that this database would achieve that goal. Following are more than a dozen comments shared by ADDitude readers.

“Nothing About Us Without Us!”

“I believe that collecting and studying medical records related to autism can be valuable — but only if it is done ethically, with full transparency, and with the informed consent of individuals and families. Trust, privacy, and the protection of autistic people’s rights should be at the center of any such effort.”

“I have not knowingly participated. But being AuDHD and on Medicaid for ADHD makes me very much a part of this. This makes me very nervous. I feel more anxiety about discrimination than I do hope about research breakthroughs.”

“I understand the exceptional possibilities of researching, connecting, and resourcing families touched by autism. However, (this database) must be paired with mandatory ethical guidelines and government-backed regulations to ensure that families, students, job applicants, etc. are not discriminated against if their status can be ‘looked up.'”

“Voluntary registration to connect with others: Great idea. Government oversite of such a registry? No way. Every administration has its own agenda, and you have no way of knowing how the information will be used. It smacks of lack of privacy, lack of safety, lack of internet security, and especially the possibility for abuse of power over the vulnerable.”

“Both my college-aged and teenage children who are autistic are against the idea of a registry. They feel it could be used to track them and their personal information without their consent. They also feel this is preferred more by parents than actual autistic people, who often do not get to voice their experiences to professionals. Many teenage and adult autistic people are begging for a voice in this conversation!”

“Connecting to supports is important but a nationwide registry is not necessary to facilitate this. It could (and in my opinion, would) be used for purposes that would not benefit and could cause major harms to the families and/or the children who are on the ‘list.’ This is a major moral, ethical, and privacy issue. What kinds of data management would be put in place to ensure that individuals as well as families and communities (especially Indigenous peoples and other vulnerable communities) have control over how, when, where, and why the data is accessed?”

“How about a voluntary registry? Long-term data is good, but there needs to be consistency and confidentiality. This should not be done without full consent of the people being studied. Nothing about us without us!”

“I am fearful that a national registry of those identified on the autism spectrum could be used against them rather than to help link them to supports.”

“I am horrified as I fear for an unjust use of this data. As a clinical therapist, I am almost reluctant to record ADHD and ASD as diagnoses. This is a frightful reversal to our cultural values in which I grew up.”

“I feel like the idea of an ‘autism registry’ is being created for the wrong reasons. While it may be presented as a tool for research or support, it raises serious concerns about privacy and potential misuse. A centralized list of autistic individuals could easily be weaponized — whether intentionally or through systemic bias — and used to deny people opportunities in areas like employment, housing, education, or even healthcare. It could lead to increased surveillance, reinforce harmful stereotypes, and deepen the stigma that already exists around autism.”

“Most of the current communities that provide services to autistic individuals are the de facto registries and are also (in theory) under HIPPA disclosure standards. I do not trust that setting up a brand-new registry would be up to that standard of protecting the rights and privacy for individuals and families.”

“I support the opportunity for connections, but the availability for others to use personal medical data without consent is abominable. I fear this information will be used against people in hiring and in obtaining benefits. I have several autistic co-workers, and I am scared for them.”

“If this was for research only, or to sign up for some valid benefit, it wouldn’t feel so ominous. But the way this is being handled, it feels like a target list, and I don’t trust that those added to these lists won’t suffer in some way or another, like loss of economic opportunities.”

“It feels like an invasion of privacy to force individuals into a registry. It also further perpetuates the narrative that autistic and neurodivergence is a problem or needs to be ‘fixed’. It truly brings me despair. We deserve better, and everyone deserves education on things they don’t personally relate to/are directly related to.”

“The amassing and studying records are steps of good science. But I don’t trust the intentions, the word, or the medical judgement of the people who want to do the amassing and studying in this case. I hope those with legal standing will try to stop these actions.”

Autism Registry Proposed by the MAHA Commission: Next Steps

• Analysis: MAHA Report – 3 Takeaways for the ADHD Community
• Read: RFK Jr., Is Spreading a Dangerous, Ignorant Myth About Autism
• Learn: MAHA Commission Means Fear, Stigma, Health Threats for Two-Thirds of ADDitude Readers
• Background: MAHA Commission Draws Swift Criticism, Condemnation

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First, I would encourage you not to be defensive during your visit. Clinicians have to follow a process to give you a diagnosis. This may seem like a waste of time, but a full differential diagnosis requires more than just asking neurodivergent-related questions. You may be asked questions that you feel are irrelevant, but that are important nonetheless.

There might be something you can learn, and something that you can teach the clinician. I have thanked patients for correcting me about certain things and I think that those interactions have been transformative for them too. I know I’ve learned from them.

[Take the Autism in Women Self-Test]

Having said that, it is important for all of us to feel respected, and that includes respect from your clinician. If you feel your provider is cynical or not listening to you, or they’re not acting in a collaborative way, then you can say thank you and move on.

Q: “What are the common misdiagnoses given to girls and women with ADHD and autism?”

Autistic girls and women with ADHD are often diagnosed with borderline personality disorder. This is a difficult differential diagnosis because it entails so much — dichotomous thinking, emotional reactivity, and fears of rejection and abandonment.

They also get misdiagnosed with bipolar disorder and, more commonly, with obsessive-compulsive disorder (OCD). This is because many neurodivergent individuals like repetitiveness, or like to systematize things, and have trouble interrupting a sequence, but that doesn’t necessarily mean they have OCD. It’s also not uncommon to have co-occurring conditions.

Q: “Are autistic girls with ADHD more likely to experience emotional dysregulation than their neurotypical peers?”

Emotional dysregulation is not part of the diagnostic criteria for ADHD or autism, but it is very much a part of the lived experience for both conditions — and it can be very impairing. Rejection sensitivity (the tendency to intensely react to real or perceived rejection), along with spiraling emotions or thoughts, impairs a person’s functioning and ability to interact and listen.

[Get This Free Download: Your Autism Evaluation Checklist]

According to society’s gender roles, girls and women are not supposed to get upset or display anger. When faced with rejection, we may hold it in and mask — only to eventually explode. So being unable to understand our emotions and know when we need to breathe, or step away, is important.

AuDHD Diagnosis: Next Steps

• Take These Self-Tests:
  • ADHD in Women
  • Autism in Women
• Learn: How to Get Evaluated for Autism as an Adult
• Read: Autism and ADHD in Adults
• Read: “Women Need Better, More Accurate Diagnostic Tools for ADHD”
• Read: “What to Expect After Your AuDHD Diagnosis”
• Read: ADHD, Autism, and Neurodivergence Are Coming Into Focus
• Read: “A Living Contradiction” — The AuDHD Experience
• Free eBook: The Truth About Autism in Adults
  

Karen Saporito, Ph.D., is a licensed clinical psychologist who has been in private practice for more than 20 years.

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When Robert F. Kennedy, Jr. calls autism a “preventable disease” and floats the idea of an autism registry, he’s not only spouting fringe opinions. He’s echoing a long and harmful legacy of framing neurodivergent people — especially autistic people — as broken, burdensome, and in need of fixing.

As an autistic adult raising two autistic children, I know firsthand how this rhetoric shapes public perception, policy, and everyday life. I know how much damage it can do.

In casting autism as a public health crisis and something that “destroys families,” RFK, Jr. is stripping autistic people of their humanity. Our identities become problems to be solved, not lives to be understood or supported. The implication is that people like me and my children should not exist — or at the very least, should be feared, tracked, or corrected.

[Read: “Rising ADHD and Autism Rates Reflect Education — Not a Crisis”]

These comments from the secretary of Health and Human Services aren’t new. They echo decades of pathologizing narratives, including from some mainstream autism organizations that have historically centered some parents’ despair at raising neurodivergent children while ignoring autistic perspectives. But when the nation’s health secretary proposes a government registry of autistic people, it takes that fear-based framing out of the shadows and puts it on a national stage. It taps into old eugenic ideas and weaponizes public health rhetoric against a marginalized group.

Research shows just how dangerous this framing is. Autistic people already face higher rates of discrimination, mental health challenges, and suicidality — especially when we lack acceptance and community.¹ Portraying autism as a tragedy increases stigma, which in turn predicts worse well-being and reduced access to needed supports.² It also correlates with more negative parenting experiences: studies show that when caregivers view autism through a deficit lens, they report higher stress and lower family quality of life.³ In contrast, when autism is understood as a neurotype rather than a disease, outcomes improve — not just for autistic individuals, but for their families as well.

In raising two young children — both delightful, both autistic — my days are filled with sensory swings and deep chats and meltdown management and belly laughs. It’s not always easy, but parenting never is. The hard parts don’t necessarily come from my kids’ neurotypes. They often stem from systems and expectations that were never built for people like us.

When public figures portray autism as a tragedy, they reinforce those broken systems. Insurance becomes harder to access for affirming therapies. Schools and workplaces feel justified in denying accommodations. Families are instructed to control and conform instead of adapt. And autistic people — especially those who are also queer, BIPOC, or multiply disabled — internalize the message that their very being is a mistake.

[Read: ADHD, Autism, and Neurodivergence Are Coming Into Focus]

But there is another story we can tell, one rooted in dignity, interdependence, and acceptance. It’s the story I live every day as I advocate for my kids and unlearn the shame I once felt about my own mind. It’s the story of thousands of autistic adults who are fighting not just for services, but for belonging. It’s the story the neurodiversity movement has been telling for years, and it deserves a louder megaphone than RFK, Jr.’s.

We don’t need a registry, and we don’t need a “cure.” We need a revolution in how we understand autism — not as something to be feared, but as a natural part of human diversity. Our job isn’t to eliminate autism. It’s to eliminate barriers and provide support so that all autistic people can live joyful, self-directed lives.

Autism and Neurodiversity: Next Steps

• Free eBook: The Truth About Autism in Adults
• Read: MAHA Commission Means Fear, Stigma, Health Threats for Two-Thirds of ADDitude Readers
• Read: “ADHD Is an Actual Condition. You Can’t Beat It Out of a Child.”

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Sources

¹ Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9(1), 42. https://doi.org/10.1186/s13229-018-0226-4

² Botha, M., & Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by autistic people. Society and Mental Health, 10(1), 20–34. https://doi.org/10.1177/2156869318804297

³ Botha, M., & Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by autistic people. Society and Mental Health, 10(1), 20–34. https://doi.org/10.1177/2156869318804297

Daily life is interesting, to say the least, with two conditions that try to pull me in different directions.

I don’t really lose car keys or paperwork. Still, my home office is a mess.

I can focus for hours on my favorite topics and watch video after video on YouTube. But I seriously lose focus when I have to read lines and lines of text, especially if the information does not engage me.

I have quicker access to my emotions than most men, I suppose, which I’ve been bullied and teased over since childhood.

I wait until the last possible moment to get something done. (Though procrastination is something I’m getting better at addressing.) And I used to struggle a lot more with anxiety, especially over changing plans, and experience frequent meltdowns that left me feeling angry and ashamed.

Sensory sensitivities? I have a few. Noise-cancelling headphones are my source of comfort. I cover my ears when an ambulance blares by. Wood floors prevail over carpeted ones. You’ll seldom catch me barefoot.

Growing Up AuDHD and Not Knowing It

Much of my life did not make sense to me prior to my diagnoses. I was the quirky kid who struggled to fit in and who didn’t think and act like his peers. I lived in my head most of the time, coming up with all kinds of stories and doodles. In many ways, being neurodivergent, even if I didn’t know it, kept me out of trouble.

When I was placed in special education classes in elementary school, the only explanation I was given was that I was “slow.” Though teachers and psychologists told my mother that I had ADHD, she did not accept the diagnosis for fear of stigma. What would become of a Black boy with the ADHD label who also took meds? So, the diagnosis was kept from me — as were accommodations that could have helped me.

[Read: Why ADHD Is Different for People of Color]

My life began to slowly fall apart in adulthood. I felt like an impulsive, uninterested kid inside the body of a fully grown man. Finally, I sought answers for myself.

Being AuDHD Has Opened Up My World

Learning I was autistic and had inattentive ADHD gave me so many answers and set me on a path to better coping. On me most of the time are my trusted noise-cancelling headphones and a sketchbook with my favorite pens and pencils. My phone and laptop help me stay organized and keep up with day-to-day tasks. I am careful about carving out time to journal and sketch, which curbs my anxiety. I also have a support system that includes my wife, friends, family, and my church family. And I’m learning to rest and take time for myself when I need to, without guilt or shame, and well before reaching burnout.

Like many people who learn of their neurodivergence later in life, I was relieved, but I also mourned. I realized how hard I had been on my younger self — the autistic Black kid with ADHD who had no clue why he was so different. I didn’t think or behave in ways that fit cultural stereotypes. I masked a lot, and most of my interactions with people were scripted, a skill learned from years of studying the communication styles of TV news anchors.

At the same time, being ADHD and autistic has opened my world. I think differently and help others do the same. I often find answers and solutions that haven’t occurred to others. I feel deeply, which makes me compassionate and sensitive to the needs of people. The knowledge I’ve picked up from my special interests and hobbies makes me a reliable source, or at the very least someone who makes good conversation.

If ADHD and autism separately are still widely misunderstood, auDHD is on a different level. I share my diagnosis regularly with people looking for evidence of what I have, not realizing that auDHD doesn’t have a look or race, and that there isn’t a singular auDHD experience.

My advice for late-diagnosed auDHD adults, especially for Black men, would be to be patient as you begin to uncover your layers. It is natural to dwell on the many years you pushed through feeling different. But it is also an opportunity to advocate for others who grew up just like you. Your diagnosis will serve as an open door, inviting others to explore their mental health needs and challenge their thoughts about neurodivergence.

Could You Be AuDHD? Next Steps

• Take our self-tests:
  • Adult ADHD
  • Adult autism
  • ADHD in women
  • Autism in women
• Learn: How to get evaluated for autism as an adult
• Free Download: Bring this checklist to your autism evaluation
• Learn: Autism and ADHD in adults
• Understand: The auDHD experience

SUPPORT ADDITUDE
Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

In reality, there is no crisis.

The rise in diagnoses reflects a long-overdue recognition of neurodivergence — particularly among girls, women, and people of color who were historically overlooked — rather than a sudden explosion in neurodivergent individuals.

Neurodivergence Overlooked: A Well-Documented Pattern

My own neurodivergence was overlooked for many years. As a child, the only label my brain was ever given was “gifted.” At the same time, I struggled with sensory overload, social exhaustion, and the inability to complete simple tasks despite excelling in areas that schools valued. Yet, like many high-achieving girls, my difficulties were attributed to personality quirks rather than neurological differences.

It wasn’t until adulthood, while seeking evaluations for my own children, that I saw myself in the screening questions and research, leading to my own diagnoses of ADHD and autism. Like many women, I only began to understand my brain after fighting for my children to be understood.

[Take This Free Screening Test: Autism in Women]

What Explains Rising Rates of ADHD and Autism?

At first glance, rising autism and ADHD diagnoses may seem like evidence of a true increase. But research points to three other drivers: changes in diagnostic criteria, greater awareness, and increased access to evaluations.

Decades ago, autism was largely understood in terms of its most visible and disabling presentations, meaning that countless individuals — especially women, people of color, and those with high-masking traits — were overlooked. Research shows, for instance, that autistic females often camouflage their autistic traits, leading to delayed or missed diagnoses.

Similarly, ADHD was historically viewed as a disorder affecting only young boys. We understand today that women with ADHD often exhibit internalized symptoms, such as inattentiveness and emotional dysregulation, which deviate from the hyperactive, disruptive stereotypes commonly associated with the condition.

Increasing awareness of neurodiversity in general has made many people more likely to recognize signs of autism and ADHD that may have gone unnoticed in previous generations. The availability of evaluations has expanded as well, making it somewhat easier to obtain a diagnosis. And since a formal diagnosis is often required to access educational accommodations or workplace protections, many individuals have a stronger incentive to pursue assessment than in the past.

It’s also possible that neurodivergence itself has increased slightly over time due to environmental or societal influences. Some researchers have investigated whether prenatal exposures — such as pollution, maternal stress, or certain medications — could play a role, though no consensus has emerged. Others speculate that modern life, with its increasing reliance on digital stimulation, structured schooling, and high cognitive demands, may be making traits associated with autism and ADHD more noticeable or challenging.

[Watch: An Open Conversation with Temple Grandin – Autism Expert, Author, and Scientist”]

However, there is no clear evidence that these conditions are becoming more biologically prevalent, only that we are finally recognizing and understanding them on a broader scale. It’s not that more people have suddenly become neurodivergent, but that more of those who were always neurodivergent are now being identified.

Celebration, Not Alarm

Some worry that broadened diagnostic criteria has blurred important distinctions, grouping together individuals with vastly different experiences and needs. They argue this could make it harder for neurodivergent people to secure the right support, especially if those with lower support needs are seen as “using up” resources meant for those with greater needs.

But from what I’ve seen, the opposite seems to be happening. The increase in diagnoses is driving greater awareness and acceptance of varied neurodivergent experiences and that, in turn, is fueling a more unified and politically powerful advocacy movement.

The fact that more people are receiving diagnoses should be cause for celebration, not alarm. It means that more of us are gaining access to self-understanding, accommodations, and community. Autistic adults who receive a formal diagnosis report higher self-esteem and overall psychological well-being, attributing their improved mental health to better self-understanding and acceptance. Many autistic adults describe their newfound understanding of their neurodivergent mind as transformative, giving them a greater sense of identity.

The rise in diagnoses is a sign that we are finally beginning to recognize and support the diversity of human minds. Rhetoric to the contrary reflects a fundamental misunderstanding of what is happening in the neurodiversity space, and threatens to roll back progress, reinforce stigma, and making it harder for people to seek the support they need.

The answer isn’t to reduce diagnoses by retreating to outdated ideas about neurological differences. The answer is to build a neurodiversity-affirming world — one where fewer people need a diagnosis just to be seen, heard, and supported.

ADHD and Autism: Next Steps

• Take our self-tests:
  • Adult ADHD
  • Adult autism
  • ADHD in women
  • Autism in women
• Learn: How to get evaluated for autism as an adult
• Free Download: Bring this checklist to your autism evaluation
• Learn: Autism and ADHD in adults
• Understand: The auDHD experience

Charlotte Hill, Ph.D., is a policy analyst and neurodiversity educator in Oakland, California. 

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Nevertheless, a mixture of anger, grief, and relief washed over me when I was officially diagnosed. ADHD and autism, or auDHD, were my “new” realities (new only in label, of course). Though I was prepared for the evaluation, I never thought to research the emotional aftermath — an oversight I deeply regret.

Chances are that your autism and ADHD diagnoses will come with their own aftershocks. From someone who has lived it, here’s a bit of what you might experience, so you can prepare.

1. Mourning the Childhood You Never Had

The moment I walked out of my assessment, my brain flooded with unpleasant childhood memories. Many of these highlighted moments in which auDHD had been on full, plain-as-day display. My neurodivergence absolutely should have been picked up by the teachers and mental health professionals around me.

The desk that I couldn’t keep organized. The room that I couldn’t keep clean. My inability to focus on anything beyond my passions and interests. The executive dysfunction that plagued me. My zero tolerance for boredom. My lack of eye contact. My tendency to self-isolate. And the stims. Oh, the stims.

[Take This Self-Test: Autism in Girls]

But that’s just the tip of the iceberg. I was misdiagnosed, hospitalized, over-medicated, and left without improvement or answers. Every aspect of my life had been a baffling uphill battle.

Post-diagnosis, I was thrust into a period of mourning for the little girl who should have had a much easier childhood. I cried for the preteen who couldn’t keep up. I desperately wanted to time travel and reassure the younger versions of myself that everything would be OK, that help was coming.

Your diagnosis, like mine, will be validating. It may also set off intense grief for what could have been. No amount of obsessive scientific research could have given me the tools to grapple with that.

2. You’ll Unmask — Willingly or Otherwise

Don’t be surprised if your auDHD symptoms appear to intensify immediately after your diagnosis. I struggled to focus, and my socializing abilities (which were already abysmal) plummeted. My friends and family began to comment on my fidgeting. A couple of rude people even asked questions like, “How come you weren’t like this before your diagnoses?”

While their inquiries were decidedly insensitive, I actually asked the same questions in my own head. Why was I suddenly struggling more? It was mystifying, until I realized that my symptoms and struggles had not changed, but my relationship to them had shifted. More specifically, I was more accepting of them.

[ADHD, Anxiety, and Autism: Your AAA Guidebook]

My diagnoses, while emotionally draining, also illuminated all the shame I had buried deep within. The dual diagnoses felt like a permission slip — an unspoken authorization to ditch the neurotypical façade. The mask I had donned all these years was probably why I was able to fly under the radar for so long, but it never really camouflaged my otherness.

My diagnoses gave me the courage to gently remove the mask altogether, examine it, thank it for its service, and bid it farewell. It was terrifying, like saying goodbye to a lifelong toxic friend. But it also felt like an important step in the radical acceptance of myself as an autistic woman with ADHD. And that meant that more people were able to observe my fidgeting, hyperactivity, executive dysfunction, stimming, disorganization, and a host of other symptoms to an extreme they hadn’t seen before.

It was, and still is, nerve-racking. But it felt, and still feels, deeply necessary.

3. You’ll Develop a New Interest: AuDHD Awareness and Advocacy

One of the pleasant surprises of my post-diagnosis existence was the opportunity to hyperfixate on a good cause. I now co-exist with the insatiable urge to learn, speak, and write more about neurodivergence. I revel in building connections with others (especially women) who are autistic and/or have ADHD, and I hope to raise awareness about the realities and nuances of these conditions.

With all its challenges, my post-diagnosis life is brimming with a new sense of purpose. I have an identity outside of auDHD, but this part of me is loud and large. It’s integral to who I am, who I was, and who I will become.

In a world full of misinformation and stigma surrounding neurodivergence, I feel uniquely positioned to speak up. It is incumbent upon me – while still figuring out life with auDHD — to share my joy, my struggle, and my truth. I hope my perspective can help other women with auDHD expand their own awareness and become inspired to advocate, too.

Could You Be AuDHD? Next Steps

• Take our self-tests:
  • Adult ADHD
  • Adult autism
  • ADHD in women
  • Autism in women
• Learn: How to get evaluated for autism as an adult
• Free Download: Bring this checklist to your autism evaluation
• Learn: Autism and ADHD in adults
• Understand: The auDHD experience

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Children and adolescents with avoidant restrictive food intake disorder (ARFID) are more likely to have comorbid neurodevelopmental and psychiatric disorders like autism, ADHD, and anxiety, according to a new study¹ published in The Journal of Child Psychology and Psychiatry.

Among the 30,795 children included in the large-scale study, those with ARFID (n=616) were 14 times more likely to have autism and nine times more likely to have ADHD than were children without ARFID. They also demonstrated an increased risk for OCD, separation anxiety, generalized anxiety disorder (GAD), depression, learning disorders, conduct disorder, and more.

These results stand out amid the relatively scarce research data on ARFID, an eating disorder added to the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-5) in 2013.

“This study is one of the few large-scale epidemiological investigations of ARFID comorbidities in a general population sample,” the researchers wrote. “The findings emphasize the importance of incorporating routine screening for neurodevelopmental disorders, anxiety, and depression into ARFID assessments.”

Individuals with ARFID avoid foods based on sensory characteristics, a lack of interest in eating, and/or fear-related concerns over adverse eating experiences — not due to the body image concerns that compel other eating disorders like anorexia nervosa. ARFID is characterized by a “failure to meet appropriate nutritional and/or energy needs.”

Despite affecting 1-2% of children and adolescents², ARFID is often excluded from eating disorder discourse and clinical examinations. ARFID’s high comorbidity can complicate symptom identification, according to researchers.

“It’s important to really think about those with ADHD being at risk for a variety of eating disorder thoughts and behaviors, not just binge eating,” said Christine Peat, Ph.D., in a 2024 ADDitude webinar, “Eating Disorders Comorbid with ADHD: What You Need to Know About ARFID, Anorexia, and Others.” “In clinical contexts, ARFID and atypical anorexia nervosa may be overlooked, even in very routine eating disorder screenings.”

The study’s results emphasize the importance of identifying ARFID, the diagnosis of which may shed light on comorbidities.

“Early identification of these comorbidities can facilitate timely, targeted interventions and improve treatment outcomes,” the researchers wrote.

One ADDitude reader, Tiffany Bird, suffered decades of poor health before being diagnosed with ARFID in her late 20s. “For the first time, a doctor fully examined me and determined that I’ve been severely malnourished my entire life, no matter what ‘the numbers’ might have said. It made complete sense,” wrote Bird in an ADDitude guest blog post, “I went Over 25 Years Without Consuming a Vegetable.”

ARFID and Neurodevelopment Disorders

The study examined parent reports for 30,795 children born between 1992 and 2008, at 9 or 12 years old (depending on their cohort), from the Child and Adolescent Twin Study in Sweden. The parents rated their child using three measures of neurodevelopmental and psychiatric disorders: the A-TAC inventory, the Screen for Child Anxiety Related Emotional Disorders (SCARED), and the Short Mood and Feelings Questionnaire (SMFQ). The researchers examined the relationship between having ARFID and showing symptoms of other disorders using linear and logistic regressions.

The link between ADHD and ARFID found in the study reflects preliminary research in this area. According to Peat, one study found that 25% of adults with ARFID also had ADHD, and another reported that 10% of children and adolescents with ARFID had been diagnosed with ADHD at some point in their lives.

“We are so far from having causal explanations for this overlap,” Peat said. “But maybe kids and adults with ADHD are just sort of more biologically predisposed to have difficulty with sensory characteristics with food, so maybe that makes them more vulnerable to going on to develop something like ARFID.”

The study’s results regarding autism and ARFID also mirror prior research. One meta-analysis reported that autism was present in 16% of individuals with ARFID³.

People with ARFID are more likely to have autism than those without, and vice versa, possibly due to heightened sensory issues and inflexibility due to anxiety around change, both symptoms of autism, according to an article in ARFID Awareness UK.

ARFID and Psychiatric Disorders

According to the study, children with ARFID were four to six times more likely to have a psychiatric disorder, with OCD and anxiety presenting the greatest risks.

The most common type of anxiety found in the study was separation anxiety, which contrasts previous research that found GAD to be more common. This could be because of the younger age of onset characteristic of separation anxiety or younger age of the sample, the researchers wrote. However, they also hypothesize another reason their results differed.

“One hypothesis worth exploring is that separation anxiety is increased in ARFID because children fear separation from caregivers due to the potential for unanticipated exposure to feared foods or feeding-related situations,” the researchers wrote.

The study also found a higher rate of oppositional defiant disorder (ODD) (19.4%) than reported in previous studies, suggesting a possible overlap of symptoms between the two disorders.

“Our findings suggest that food-related conflicts may underlie the observed risk of ODD in ARFID, but further research is needed to confirm this association,” the researchers wrote.

Children with ARFID were found to face a higher risk for anxiety than depression. Depression is common among children with other eating disorders, according to the researchers. This discrepancy in comorbidities highlights the differences between ARFID and other eating disorders.

“The defining feature [of ARFID] is a persistent and pervasive eating or feeding disturbance in which someone is simply not meeting all of their nutritional needs,” Peat said. “In ARFID, these people don’t necessarily have that fear of fat or fear of weight gain.”

Gender and ARFID

Prior research may suggest that ARFID is more common in young males. However, this study found no gender-based differences in comorbidity rates associated with ARFID, meaning that the likelihood of having symptoms of another disorder in conjunction with ARFID did not significantly differ based on sex.

The results did indicate that, overall, boys had higher odds of developing a neurodevelopmental disorder, depression, and sleep problems; girls had higher rates of anxiety disorders (except for panic disorder).

“Unlike other eating disorders, the distribution of males and females with ARFID has been reported to be approximately equal,” the researchers wrote. “Given the sex differences observed in the prevalence of (neurodevelopmental disorders) and psychiatric conditions, it is important to investigate whether these sex differences are also present in individuals with ARFID.”

The study’s sample did not include transgender and nonbinary youth, a major limitation considering that transgender, nonbinary, and gender-expansive kids are at higher risk for eating disorders compared with their cisgender peers.

“There remains an urgent need to develop integrated treatment approaches that address both ARFID and its co-occurring conditions,” the researchers wrote.

Sources

¹ Nyholmer, M., Wronski, M.-L., Hog, L., Kuja-Halkola, R., Lichtenstein, P., Lundström, S., Larsson, H., Taylor, M.J., Bulik, C.M. and Dinkler, L. (2025), Neurodevelopmental and psychiatric conditions in 600 Swedish children with the avoidant/restrictive food intake disorder phenotype. J Child Psychol Psychiatr. https://doi.org/10.1111/jcpp.14134

² D’Adamo, L., Smolar, L., Balantekin, K.N., Taylor, C.B., Wilfley, D.E., & Fitzsimmons-Craft, E.E. (2023). Prevalence, characteristics, and correlates of probable avoidant/restrictive food intake disorder among adult respondents to the National Eating Disorders Association online screen: A cross-sectional study. Journal of Eating Disorders, 11, 214. https://doi.org/10.1186/s40337-023-00939-0

³ Sader M, Weston A, Buchan K, Kerr-Gaffney J, Gillespie-Smith K, Sharpe H, Duffy F. (2025) The Co-Occurrence of Autism and Avoidant/Restrictive Food Intake Disorder (ARFID): A Prevalence-Based Meta-Analysis. Int J Eat Disord. 58(3):473-488. https://doi.org/10.1002/eat.24369

A lifetime of masking can cause chronic stress and anxiety for many autistic people with ADHD who identify as AuDHD. Add in a reduced tolerance for stimulus, frequent social isolation, and a lack of support — and burnout becomes equally common and devastating. AuDHD burnout is a serious mental health problem that can cause extreme distress and debilitation.

Often, burnout is mistaken for other mental health conditions. But we can only recover from burnout when we recognize why it’s happening and take appropriate steps to get support. After all, you cannot prevent, reduce, or recover from burnout when you don’t know what’s causing it.

In this webinar, you will learn:

• About the differences and similarities between ADHD and autism
• About the importance of an accurate autism diagnosis in adults and why the current diagnostic criteria does not reflect the lived experiences of many
• Why autistic people mask and how a lifetime of masking can lead to chronic stress and burnout
• How to identify warning signs of burnout, including fatigue, withdrawal, and a decline in skills, and how this differs from other mental health issues like depression
• About strategies to prevent or recover from burnout

Watch the Video Replay

Enter your email address in the box above labeled “Video Replay + Slide Access” to watch the video replay (closed captions available) and download the slide presentation.

AuDHD Resources

• Take This Self-Test: Autism in Women
• Read: AuDHD — An Overview
• Read: “A Living Contradiction:” The AuDHD Experience
• Read: ADHD, Autism, and Neurodivergence Are Coming Into Focus

Obtain a Certificate of Attendance

If you attended the live webinar on April 30, 2025, watched the video replay, or listened to the podcast, you may purchase a certificate of attendance option (cost: $10). Note: ADDitude does not offer CEU credits. Click here to purchase the certificate of attendance option »

Webinar Sponsor

Masking your neurodivergence is exhausting, but you don’t have to hide who you are. Inflow gets it, and is here to support you. Their science-backed app is built by leading ADHD clinicians and can help you embrace your AuDHD, reduce burnout, and build resilience. Ready to drop the mask and thrive? Start by taking the free ADHD traits quiz today.

ADDitude thanks our sponsors for supporting our webinars. Sponsorship has no influence on speaker selection or webinar content.

Meet the Expert Speaker

Dr. Amy Marschall is a licensed psychologist, author, and speaker. She is an expert in neurodiversity-affirming care, especially for the autistic and ADHD communities. She is the author of several books, including Neurodiversity-Affirming Therapy: What Every Mental Health Provider Needs to Know (#CommissionsEarned), which will be released in April 2025.

Dr. Marschall was diagnosed as AuDHD as an adult and is an advocate for her communities, bringing both professional and personal expertise. She has mental health resources and continuing education courses for therapists, which can be found on her website, www.resiliencymentalhealth.com.

#CommissionsEarned As an Amazon Associate, ADDitude earns a commission from qualifying purchases made by ADDitude readers on the affiliate links we share.

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The vocal anti-vaccine activist David Geier has been chosen by the Department of Health and Human Services (HHS) to conduct its planned study on vaccines and autism, reports The Washington Post. Geier, who is listed in the HHS directory as a “senior data analyst,” is not a doctor. He was disciplined in 2011 for practicing medicine without a license alongside his father, Mark Geier, M.D., who administered non-approved medication to autistic children and later had his medical license suspended. David Geier has written widely discredited research papers linking vaccines to autism and is co-founder of a company that helps individuals sue the government for alleged harm caused by vaccines.

March 18, 2025

Numerous authoritative studies prove that no connection exists between vaccines and the development of autism. Still, the U.S. Centers for Disease Control (CDC) is planning a large study on the topic, reports Reuters. The plans come amid declining immunization rates resulting from vaccine skepticism, which have led to an increase in preventable illness. In West Texas and New Mexico, a measles outbreak has left more than 290 people infected and one unvaccinated child dead. This death is the first due to measles in the United States in a decade.

As an agency of HHS, the CDC falls under the jurisdiction of U.S. Health Secretary Robert F. Kennedy, Jr., who has historically questioned the safety of childhood vaccines, making unsubstantiated claims that the measles, mumps, and rubella (MMR) vaccine is linked to autism. No details have emerged about the scope and nature of the forthcoming CDC study, or Kennedy’s involvement with it.

The news of the study has prompted criticism from the medical community. “We know from repeated research that there is not a link,” said President of the American Academy of Pediatrics (AAP). Susan Kressly, M.D., in a statement. “Devoting more research dollars to answer a question that is already known does not add to our knowledge about the safety of vaccines.”

Tina Tan, M.D., President of the Infectious Diseases Society of America expressed additional concerns about the study in a recent statement. “It means that significant federal resources will be diverted from crucial areas of study at a time when research funding is already facing deep cuts,” she wrote. “CDC’s study on the safety of vaccines could drive misinformation, leading to lower vaccination rates, more serious, vaccine-preventable disease outbreaks, and a significantly weakened public health response.”

Since the COVID-19 pandemic, vaccination rates for children across the nation have steadily dropped. According to the CDC, immunizations for MMR, polio, diphtheria, tetanus, and pertussis have decreased in more than 30 states. In 2024, approximately 280,000 kindergartners remained unvaccinated for measles, compared with 180,000 before the pandemic.

Though Discredited, Study’s Legacy of Fear Persists

Fears of a link between the MMR vaccine and autism were first sparked in 1998, when a now-discredited study by Andrew J. Wakefield, M.D., was published in The Lancet. Wakefield’s research, which comprised case studies of eight autistic children and no control group, was found to be seriously flawed, and was retracted. In 2010, the General Medical Council (GMC) found Wakefield guilty of professional misconduct, including performing unnecessary invasive medical procedures on children and failing to divulge payment he received from attorneys involved in MMR litigation. Wakefield was subsequently banned by the GMC from practicing medicine.

Since the initial publication of Wakefield’s article, dozens of rigorous, large-scale studies have found no evidence of an association between the MMR vaccine and autism.^{1, 2,3} These include a large-scale Danish study, published in the New England Journal of Medicine, which involved more than 537,000 participants (all the children born in Denmark over a 7-year period)⁴ as well as a meta-analysis involving cohort and case-control studies and more than 1.2 million children.⁵

The clear consensus within the scientific community is this: Vaccines do not cause autism. What does cause autism remains the subject of scientific inquiry.

Autism, like ADHD, has been revealed to be a highly heritable neurodevelopmental disorder, and more than 100 genes have been associated with the condition, but experts agree that genetics and environmental factors likely play a role. It is highly co-morbid with ADHD.⁶ A study of 3.5 million Medicaid-enrolled adults published in the JAMA Network last month found that 27% of autistic adults also had ADHD, a comorbidity rate confirmed by existing research.⁷ “While distinct, multidimensional, and complex conditions, ADHD and autism share a staggering number of traits and symptoms, and co-occur at significant rates,” wrote Karen Saporito, Ph.D. in the ADDitude article, “ADHD, Autism, and Neurodivergence Are Coming Into Focus.”

Controlling for a host of potentially confounding factors is critical in uncovering causes of autism, but this is often hard to accomplish. A recent study published in Nature Metabolism found a possible association between a Western diet pattern among pregnant women and the development of autism and ADHD in their children, though experts have raised concerns about inadequate controlling of genetic factors, which may skew results.⁸

“A Distraction from Critical Research”

Autism diagnosis rates have risen dramatically over the past few decades. According to the CDC, approximately 1 in 36 children is now diagnosed with autism — a four-fold increase in prevalence compared to 20 years ago.

While the explanation for this increase is still unclear, experts attribute much of it to better screening, heightened autism awareness, and a more nuanced understanding of the broad range of behaviors that can be associated with the condition.

This improved awareness is essential not just for diagnosing autism, but for supporting and empowering individuals with autism to thrive in school, at home, at work, and in relationships. Effective supports are often revealed in research, and it is exactly this kind of research that suffers when funding is diverted to studies such as that planned by the CDC, Kressly argued in the AAP statement.

President of the Autism Society of America, Christopher Banks, echoed this sentiment: “The continued promotion of debunked vaccine theories only serves as a distraction from the critical research needed to better understand autism,” he said. “The conversation must shift to the public health issues that actually affect the autism community: access, affordability, and quality of healthcare services.”

In combination with other advocacy organizations such as The Arc and American Association of People with Disabilities (AAPD), the Autism Society called upon policymakers to broaden funded research priorities from the causation of autism to the unmet healthcare needs of the autistic community. These needs include early diagnosis and intervention, equal access to treatment, interventions for communication, mental health support, crisis intervention, and clinician training.

“The medical community has its work cut out for it,” said Saporito. “Neurodevelopmental conditions are not a standard part of medical training and many medical providers remain unaware of how to diagnose and support these conditions.”

It is critical, Saporito argued, to recognize the need for effective supports among people with autism while also using de-stigmatizing language to talk about the condition in a way that does not medicalize or pathologize differences in thinking and functioning.

“Autistic individuals are just that – individuals who provide tremendous value to our society and enrich our communities,” Kressly explained in her statement. “We encourage dedicating resources toward evidence-based best practices that ensure that every child receives the care and opportunities they deserve.”

Sources

¹Uchiyama T, Kurosawa M, Inaba Y. MMR-vaccine and regression in autism spectrum disorders: negative results presente from Japan. J Autism Dev Disord 2007;37:210-217.

²Jain A, Marshall J, Buikema A, et al. Autism occurrence by MMR vaccine status among US children with older siblings with and without autism. JAMA 2015;313(15):1534-1540.

³Hviid A, Hansen JV, Frisch M, Melbye M. Measles, mumps, rubella vaccination and autism. Ann Int Med 2019

⁴Madsen KM, Hviid A, Vestergaard M, et al. A population-based study of measles, mumps, and rubella vaccination and autism. N Engl J Med 2002;347(19):1477-1482.

⁵Taylor LE, Swerdfeger AL, Eslick GD. Vaccines are not associated with autism: an evidence-based meta-analysis of case-control and cohort studies. Vaccine 2014;32:3623-3629.

⁶Hours C, Recasens C, Baleyte JM. ASD and ADHD Comorbidity: What Are We Talking About? Front Psychiatry. 2022 Feb 28;13:837424. doi: 10.3389/fpsyt.2022.837424. PMID: 35295773; PMCID: PMC8918663.

⁷Ying Rong, Chang-Jiang Yang, Ye Jin, Yue Wang, Prevalence of attention-deficit/hyperactivity disorder in individuals with autism spectrum disorder: A meta-analysis. Research in Autism Spectrum Disorders. 2021 May 83: 101759. ISSN 1750-9467, https://doi.org/10.1016/j.rasd.2021.101759

⁸Horner, D., Jepsen, J.R.M., Chawes, B. et al. A western dietary pattern during pregnancy is associated with neurodevelopmental disorders in childhood and adolescence. Nat Metab (2025). https://doi.org/10.1038/s42255-025-01230-z

Donald Trump and Robert F. Kennedy, Jr., don’t understand ADHD or autism.

President Trump has a history of using the r-word. Health and Human Services Director RFK, Jr., has long maintained that vaccines cause autism, despite piles of evidence to the contrary; he’s even described autism by saying, “the brain is gone.” So it’s no shock that their new Make America Healthy Again Commission, established February 13, bristles with misunderstanding about both the rise in ADHD and autism diagnoses, and so-called “over-medication” of these and other conditions.

We’ve heard it all before. “Autism spectrum disorder now affects 1 in 36 children in the United States — a staggering increase from rates… during the 1980s,” they say. In the case of ADHD, “over 3.4 million children are now on medication for the disorder — up from 3.2 million children in 2019-2020 — and the number of children being diagnosed with the condition continues to rise.” It’s the kind of desperate handwringing we often hear from the fringes. Seeing it in an executive order from the president’s desk is admittedly scary.

The commission offers up all manner of scapegoats for this so-called rise in neurodivergence, or possibly false diagnoses. There are the usual suspects: diet, lifestyle, environmental factors. It also offers up some new boogeymen, including the “absorption of toxic material,” “medical treatments,” “electromagnetic radiation,” and “corporate influence or cronyism.” Never does this executive order grope toward the real reason: Refined diagnostic standards and outreach programs have created a wider net, which catches children before they spiral downward in adulthood. These improved standards have benefited all neurodivergent people, but particularly women and minorities.

ADHD Has Excluded Girls and Women

Back in the 1980s and 1990s, we thought attention deficit hyperactivity disorder was a condition for boys who couldn’t sit still. Millions of girls daydreamed and drifted in class. We made careless mistakes. We underperformed. We talked too much. But no one noticed. We were girls, and we didn’t cause a fuss. Now we know that those little girls also had ADHD. I was one of them. Yes, the number of children diagnosed with ADHD has risen, and thank God for it.

[Read: Why ADHD in Women is Routinely Dismissed, Misdiagnosed, and Treated Inadequately]

Every year, I see those little girls in my classroom, and I sit their parents down for the talk: Have you considered having your daughter tested? I tell them: Look, she’s 9, 10, 11. It may not seem like a big deal now, and sure, she’s doing great. But when she’s 15 or 18 or 30, that picture may look a lot different. I had all As ‘til I rage-quit a doctoral program. And every year, some parents ignore me. Others go on to get their daughters tested. Those kids go into the world armed with the help they need.

I have three boys, all with ADHD. None would have been caught in the diagnostic net of 1988 — they aren’t severe enough, troublesome enough. One has mixed-type ADHD that severely impacts his ability to concentrate on subjects he doesn’t like. He would desperately underperform without medical help. Another has inattentive ADHD, and he copes fine without medication at the moment. The youngest also has inattentive type and needs medication to function. He would have slipped through the cracks.

My husband and I both soldiered through school without ADHD diagnoses. Like most undiagnosed neurodivergent kids, we knew we weren’t like everyone else, but we didn’t know why. Therefore, we assumed something was terribly wrong with us, and it must be our fault. We blamed laziness — after all, weren’t teachers always demanding to know why we made so many careless mistakes? We blamed intellectual inferiority — we must be dumber than everyone else if we couldn’t pay attention.

Our self-esteem took a beating. This is remarkably common in the neurodivergent community. We’re trying to save our kids from it, and we’ve made remarkable headway.

With one stroke of a pen, this executive order would undo all that progress.

[Get This Free Download: A Parent’s Guide to ADHD Medications]

We’re Back to Blaming Parents for ADHD

U.S. Senator Tom Turberville (R-Alabama) lamented during RFK Jr.’s Senate confirmation hearings, “Attention deficit [ADHD], when you and I were growing up, our parents didn’t use a drug; they used a belt and whipped our butt… Nowadays, we give them Adderall and Ritalin. It’s like candy across college campuses and high school campuses.”

Then he asked Kennedy what he planned to do about the so-called over-prescription of stimulant medication for ADHD. The MAHA Commission is looking for someone to blame, and it has clearly chosen mothers. Why didn’t you feed your child organic food? Why did you vaccinate them? Why don’t you take them outside more, take away their screen? Why did you hand them a pill instead of parenting properly? It’s rife with assumptions, chief among them: This is your fault.

Once we blamed autism on cold mothers. Then we blamed it on their decision to vaccinate. Now we blame ADHD on permissive parenting.

Tuberville and Kennedy assume we give our kids pills because it’s “easier” than using an authoritarian style of parenting. We should be spanking the hyperactivity out of our kids instead of handing them Ritalin! That’ll cure the fidgets!

Clearly, none of these people have read the research: Authoritarian parenting leads to more negative outcomes, including aggression, delinquent behaviors, and anxiety. And that’s in neurotypical children. Ironically, authoritarian parenting — what Tuberville is suggesting when he tells us not to spare the rod — is shown to exacerbate ADHD symptoms.

We’re doing the best we can.

The Decision to Medicate Is Not Taken Lightly

No one gives their children medication as a first, second, or third choice. We try everything. We mess with their sleep schedules. We cut out foods and add fish oil. We give them more exercise and we modify their screen time. We try schedules. We try chore charts. We modify our parenting. We attempt everything. Ritalin scares us. And ADHD medication is hard to find — do these people really think we have the spare time to cruise different pharmacies, to try to find who has our prescription in stock? Do they think we want to obsess over side effects?

Handing your child a pill is scary. But some kids need it the way other kids need a heart medication, a diabetes medication. We should never pull a life-saving medication from a child.

Why do we think ADHD medication is optional? It’s not over-utilized. It’s not over-prescribed. It’s proven safe and effective and preventative for so many adverse outcomes.

We are doing the best we can by our children. The Make America Healthy Again Executive Order is rife with misunderstandings and assumptions about kids with ADHD and the people who parent them. Don’t blame parents — mothers, of course they mean mothers — for their kids’ brain differences. All people with ADHD and autism deserve the same respect and accommodation as other citizens, and that includes the right to medication at a doctor’s discretion. Our kids deserve better than this executive order. And so do we.

Make America Healthy Again Commission: Next Steps

• Free Download: The Ultimate Guide to ADHD Medication
• Read: “ADHD Is an Actual Condition. You Can’t Beat It Out of a Child.”
• Read: MAHA Commission Draws Swift Criticism, Condemnation

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Autism spectrum disorder (ASD) and cognitive disengagement syndrome (CDS) are distinct disorders, despite overlapping symptoms and high rates of comorbidity with ADHD, suggests a new study published in Research on Child and Adolescent Psychopathology¹.

The study found that autistic children with ADHD (auDHD) have a higher risk for CDS than do those with only one of these disorders. However, only 6% of the 2,000-plus children studied had an autism diagnosis without ADHD, a relatively small sample compared to the roughly 950 autistic subjects with ADHD.

CDS, previously called “sluggish cognitive tempo,” was also found to be significantly correlated with anxiety and depression, a finding supported by previous research².

With its internal distractibility, slow pace of movement, and daytime sleepiness, CDS impacts up to 40% of children with ADHD³ and around 30% to 63% of children with inattentive ADHD. Although the condition also co-occurs with ASD, research studying the link is scarce, and CDS is not formally recognized in the Diagnostic and Statistical Manual of Mental Disorders-5 (DSM).

“Most studies examining CDS in youth with ADHD have failed to evaluate for and rule autism in or out, which is important given that most referred children with autism also have ADHD,” the researchers wrote. “The primary aim of our study was to determine if the relationship between autism and CDS is due to overlapping traits or whether the two conditions are empirically distinct.”

Distinguishing CDS from other disorders, like ASD, ADHD, and depression, can be difficult for clinicians due to lookalike symptoms, according to Joseph Frederick, Ph.D., in his 2023 ADDitude webinar, “Cognitive Disengagement Syndrome: A Distinct Kind of Inattention.”

“They’re related, but they’re also separate,” Frederick said. “The high level of comorbidity is one of the challenges that we have in the ADHD field, but also in mental health in general.”

For example, social disengagement can be indicative of both ASD and CDS. “I have individuals [where] it may look like autism because they’re socially disengaged,” Frederick said. “But a lot of these children have the skills if they’re in a comfortable environment. I think the underlying reasons why a child with autism versus CDS may have these challenges may be different.”

The new research examined data from 2,209 children, ages 4 through 17, referred to a psychiatric and behavioral clinic. The subjects’ caregivers filled out a Pediatric Behavior Scale (PBS) measuring symptoms of ASD, CDS, ADHD inattentive subtype, ADHD combined subtype, and several psychopathological disorders. Factor analyses revealed that the measures for CDS and ASD did not overlap.

This means that questions on the PBS measuring CDS symptoms, such as how often children appeared “in a fog/confused,” were significantly separate from those measuring autism, an important finding for understanding how CDS should be identified and treated in people with ASD.

CDS is an attention disorder characterized by slow processing speed, hypoactivity, and daydreaming. Although it causes attention difficulties like ADHD, CDS is more associated with internal distractibility and mind-wandering.

Children with CDS are “preoccupied by what is going on in their own minds — they frequently daydream, get lost in thought, stare, or zone out,” Frederick said. “These children may appear sleepy, confused, and take longer to finish activities.”

According to the researchers, this lack of formal DSM-5 recognition does not mean clinicians should ignore CDS. Instead, this study suggests that clinicians and caregivers should pay attention to CDS as a distinct experience in individuals with ADHD and autism that may impact diagnosis and treatment.

“These results have important clinical implications, suggesting that a comprehensive assessment of CDS, autism, and ADHD is needed to make accurate diagnoses and for effective intervention planning,” the researchers wrote.

The researchers suggest that future studies examine these patterns in more diverse, population-based samples, especially considering the children in this study were predominantly male. Further research may be imperative considering how both ADHD and ASD often go underdiagnosed and misdiagnosed⁴ in girls.

Sources

¹ Mayes, S.D., Becker, S.P. & Waschbusch, D.A. Cognitive Disengagement Syndrome and Autism Traits are Empirically Distinct from each Other and from Other Psychopathology Dimensions. Res Child Adolesc Psychopathol (2025). https://doi.org/10.1007/s10802-024-01281-y

² Becker, S. P., Willcutt, E. G., Leopold, D. R., Fredrick, J. W., Smith, Z. R., Jacobson, L. A., Burns, G. L., Mayes, S. D., Waschbusch, D. A., Froehlich, T. E., McBurnett, K., Servera, M., & Barkley, R. A. (2023). Report of a work group on sluggish cognitive tempo: key research directions and a consensus change in terminology to cognitive disengagement syndrome. Journal of the American Academy of Child and Adolescent Psychiatry, 62(6), 629–645. https://doi.org/10.1016/j.jaac.2022.07.821

³ Barkley R. A. (2013). Distinguishing sluggish cognitive tempo from ADHD in children and adolescents: executive functioning, impairment, and comorbidity. Journal of Clinical Child and Adolescent Psychology, 53, 42(2), 161–173. https://doi.org/10.1080/15374416.2012.734259

⁴ Barkley R. A. (2013). Maenner MJ, Warren Z, Williams AR, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-2):1–14. http://dx.doi.org/10.15585/mmwr.ss7202a1

Emotional dysregulation is an invisible string linking sensory processing, anxiety, and ADHD in children, according to new research that explores the relationship between sensory processing subtypes and self-regulation in children with neurodevelopmental disorders. Researchers found that, while some sensory subtypes were associated with elevated anxiety and others with elevated ADHD symptomatology, all sensory processing subtypes were associated with higher emotional dysregulation compared with sensory-typical children.

The study, published in Nature, enrolled 117 participants from a community-based specialty clinic; all participants were children aged 8 to 12 years old with various neurodevelopmental diagnoses, including autism and ADHD.¹ The researchers uncovered five distinct sensory processing profiles in this group:

• Typical Sensory Processing (30% of the sample)
• Sensory Under-Responsive (20%): Child often does not respond to verbal information or what is around them
• Sensory Over-Responsive (19%): Child is bothered by wearing certain garments or by loud sounds
• Sensory Seeking (19%): Child has a persistent desire for fast movement and often cannot stop touching things or people
• Mixed Sensory Processing (11%): A combination of the above, depending on context or the stimuli

The study highlights the “wide range of heterogeneity in sensory experiences among populations with neurodevelopmental concerns,” say the study’s authors.

Elevated Emotional Dysregulation, Anxiety, ADHD

The researchers investigated the prevalence of behavioral and emotional regulation challenges in the group as a whole and in different sensory subtypes. They also considered the following comorbidities:

• 62% of the group exhibited ADHD symptoms
• 39% exhibited emotion dysregulation
• 19% exhibited anxiety

They also studied patterns associated with specific sensory subtypes:

• Children in the sensory over-responsive subtype reported significantly elevated anxiety levels.
• Children in the sensory seeking and sensory under-responsive subtypes reported the highest levels of ADHD behaviors.
• All subtypes, apart from typical sensory processing, reported elevated levels of emotion dysregulation.

These findings offer insights into the complicated relationship between sensory processing and self-regulation challenges, which researchers hope will help clinicians better serve neurodivergent children through targeted interventions that address overlapping symptomology.

“Not many people realize that the sensory systems are foundational to development, functioning and wellbeing. Differences in sensory processing may undermine the acquisition of skills of a higher order – from behavior to learning,” explains Candace Peterson MS, OTRL, in her ADDitude article. “What Is Your Child’s Sensory Profile?” “This is why sensory challenges in kids often manifest in school, show up as behavior problems, and make daily living difficult.”

An ADDitude reader who struggles with sensory over-responsiveness explains: “Sounds seem to overstimulate me the most frequently and easily. It feels like the sounds are physically pushing me into a corner and squishing me.” Another reader with sensory over-responsiveness says clothing tags and seams are her “mortal enemies.” “On good days, they’re a slight annoyance,” she says. “On bad days, it feels like they’ve come alive with tiny needles for fingers, incessantly poking at me, causing repeated stings.”

Sources

¹Brandes-Aitken, A., Powers, R., Wren, J. et al. Sensory processing subtypes relate to distinct emotional and behavioral phenotypes in a mixed neurodevelopmental cohort. Sci Rep 14, 29326 (2024). https://doi.org/10.1038/s41598-024-78573-2

Autism in Girls: Key Takeaways

• Autism in girls is overlooked because symptoms manifest differently across genders, and because of persistent gender bias in clinical and research settings.
• Compared to boys, autistic girls are more socially motivated, which may make their social challenges less apparent and thus more likely to be missed by clinicians.
• Autistic girls seldom demonstrate repetitive movements, and their special interests are more likely to be seen as typical.
• In-depth evaluations are often necessary to identify or rule out autism in girls. Other supports — from therapy to emotional regulation skill-building — can significantly help.

Autism in Girls Looks Different

About one in 36 children in the U.S. is autistic, a diagnosis that is four times more common in boys than in girls.¹ What explains this gender gap?

Science is working to determine factors that may explain autism’s diagnostic prevalence in males, but many clinicians who specialize in autism in girls and individuals assigned female at birth clearly see that gender bias — in referrals, diagnostic criteria, and tests — plays a role in diagnostic outcomes.

Autism is more readily identified in boys than in girls because, historically, the clinical and research focus has been on boys almost exclusively. Many clinicians who are trained in diagnosing autism are unaware how its traits can uniquely manifest in girls. Failing to realize that girls and women don’t always demonstrate the more stereotypical signs of autism, many clinicians end up overlooking behaviors that are indicative of autism. This is part of why girls and women are often diagnosed as autistic later in life than boys.

Signs of Autism in Girls

Social Motivation

Autism is characterized, in part, by difficulties and differences with social communication and interaction. Some autistic children may have trouble initiating or engaging in social interactions, which can result in them feeling left out or different. Some children, meanwhile, may prefer solitary activities.

Some children may struggle to understand when and how to join a conversation. An autistic child may follow up to a peer’s question with a brief response or with nothing at all, bringing the interaction to an end. Sometimes, conversations and interactions can become one-sided; an autistic child, for example, may not realize that others want to play differently and will continue to insist that everyone play a game according to very fixed rules. Autistic children may also show differences in use of eye contact, gestures, and facial expressions or misinterpret these cues from others.

[Take This Free Screening Test: Autism in Girls]

Autistic girls may experience all of the above. However, many demonstrate more social motivation — the drive to understand, connect, and enter relationships with others — than do autistic boys, which may make their social challenges less apparent and thus more likely to be overlooked.

• Autistic girls are more likely to want to fit in. As such, they are more likely to mask (i.e., hide or compensate for autistic traits) and mimic neurotypical behaviors.
• Autistic girls are more socially observant, which helps them pick up on details that allow them to better fit in and mask. It’s common for autistic girls to painstakingly study patterns in how people interact to reverse engineer “normal” behavior.
• Autistic girls are often perfectionists. The urge to fit in and flawlessly mask drives
  perfectionistic tendencies. Sensitivity to rejection is also common; when autistic girls stumble and experience social exclusion — despite their best efforts and desires to make and maintain
  friendships — the pain of rejection is profound.

Autism in Girls: The Consequences of Masking

We can’t talk about autism in girls without talking about masking. While masking often emerges as a coping strategy for socializing, especially for autistic girls without intellectual development disorder or who may not have observable behavioral or academic needs, it can create lots of issues, too.

• Masking is mentally taxing. Constantly trying to figure out others, understand unspoken
  social rules, and fit in with changing circumstances is highly exhausting.
• Masking interferes with self-understanding. Autistic girls often have trouble tuning into their own needs and emotions because masking has long forced them to suppress their authentic selves. Identity and self-esteem issues are common; some girls don’t even realize when they are masking. Masking can also interfere with friendships, as girls are unable to bring their full selves to these relationships or know what they want in a friend.
• Masking can impact clinical evaluations. Autistic girls who have become accustomed to hiding their traits may struggle to express and make sense of their behaviors and experiences, which can interfere with autism evaluations and lead to underdiagnosis or misdiagnosis. (This compounds the gender bias that causes girls’ autistic behaviors to be downplayed.)
• Masking can cause health issues. Constantly worrying about blending in with societal norms can turn into anxiety and other internalizing and physical issues. Many autistic girls tend to suppress their feelings, which causes more mental health challenges.

[Read: What Does Autism Spectrum Disorder Look Like in Children?]

Differences in Restricted and Repetitive Behaviors

Autism is characterized by restrictive, repetitive patterns of behavior, interests, or activities as demonstrated by the following signs:

• hand flapping, finger flicking, rocking, and other stereotyped behaviors (or “stims”)
• lining up, stacking, spinning, sorting and/or categorizing toys and objects
• echolalia and other forms of repetitive speech
• a strong preference for routine; resistance to change
• rigid, perseverative thinking; insistence on adherence to rules
• highly restricted, fixated interests (i.e., special interests)
• hyper- or hyporeactivity to sensory input

While autistic girls can show the above signs, these behaviors may manifest differently.

• Autistic girls are less likely to demonstrate repetitive movements. When they do, they are more likely to demonstrate different types of repetitive movements than boys, like tapping their fingers or twirling their hair, which can be easily overlooked.
• Autistic girls’ special interests are more likely to center on animals, celebrities, or fictional characters, which can seem more socially acceptable and thus less likely to be flagged as a sign of autism.

Autism in Girls: How to Support Neurodivergent Youth

Know the Signs — and Myths

Early detection is key for autistic girls to receive the support they need so they can develop self-
understanding without shame. Parents, educators, and clinicians should be aware of the above signs of
autism in girls and these common autism myths:

Clinicians: Peel Back the Layers

Clinicians overlook autism in girls, especially in those without intellectual or language disorders, because these girls can be adept at camouflaging. Their symptoms tend to be more internalizing, and they may have trouble verbalizing their experiences and what they need. Even when girls do show signs of autism, to the untrained eye, these girls can appear “not autistic enough.”

• Dig deep. Ask about relationships when evaluating girls for autism. How does your patient experience friendships and connecting with others? How does your patient feel about their ability to make friends and maintain them? How does this experience connect to her self-esteem? What is the toll of social interactions on your patient? Watch for cues that your patient finds social interactions exhausting and effortful. You may need to carry out longer assessments and observe your female patients over time so you can dive deep into their experiences. If they do not show signs of or report impairment across settings, watch for signs of subjective distress.
• Screen for comorbid conditions. Autism and ADHD co-occur at high rates, and the symptom overlap cannot be overstated. Anxiety and specific learning disorders are also common.
• Actively educate yourself on autism in girls. Seek out training and review the latest literature. Listen and learn from patients with lived experience.

More Ways to Support Autistic Girls

• Seek interventions and supports. From speech, physical, and occupational therapy to IEPs or 504 plans, secure the services that support your child’s individual needs. Medications are available to help support mood and reactivity. Talk to an autism specialist about the best interventions for your child and seek a second opinion if your provider makes you feel disrespected or unheard.
• Provide structure and routine. Stability and predictability reduce anxiety, stress, and overwhelm in autistic children, who often struggle with rigidity, inflexibility, and stress during transitions.
• Support executive functions. The cognitive skills that allow us to plan, prioritize, organize, manage time, start tasks, and self-regulate are often impaired in autistic individuals and can significantly impact daily functioning. Scaffolding in the classroom and at home can help.
• Teach healthy coping skills. Emotional dysregulation is very much a part of autism. What’s more, girls are socialized to suppress their emotions, which can accumulate and lead to intense emotional outbursts. Autistic girls must be taught emotional awareness, including how to monitor, label, and understand their emotions. Breathing exercises, mindfulness, muscle relaxation techniques, and other strategies can help improve emotional regulation.
• Talk about autism from a neurodiversity-affirming standpoint. Viewing autism from a strengths-based perspective can help young girls accept themselves, refrain from masking, and gain the confidence to advocate for themselves throughout their lives.

Autism in Girls: Next Steps

• Get This Free Download: The ADHD-Autism Link in Children
• Read: ADHD, Autism, and Neurodivergence Are Coming Into Focus
• Read: 4 Autism Myths — Dispelled
  

The content for this article was derived from the ADDitude ADHD Experts webinar titled, “AuDHD Guidance: Why Autism is So Difficult to Diagnose in Women and Girls with ADHD” [Video Replay & Podcast #511] with Karen Saporito, Ph.D., which was broadcast on June 27, 2024.

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Sources

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