Skip to content
photos of IACC meetings

Question 1 Responses

How Can I Recognize the Signs of ASD, and Why is Early Detection So Important?

Topics from Responses to Question 1

Acceptance: Autism screening and diagnosis should be used to improve access to needed services and supports; prenatal testing, if developed in the future, should not be used to prevent autism.

Respondent Response
Anonymous I worry about research intended to prevent autism altogether, which pathologizes the experience in a way that is at best offensive. I do feel that early detection is helpful in providing insight and accommodations to autistic individuals--I always knew that I experienced the world differently from most people, but I never had any idea why until about a year ago.
AutisticallyReal, Actually Autistic Advocate Priorities should include inviting members of the Autistic community to provide input. Early detection is important to support the Autistic person in their own capacity, individualized to their needs. To allow the Autistic person to build upon their strengths from as early as possible, to never make them feel as though they are a burden on society or family. Approaching 'needs' as a panic tactic (We MUST start this treatment or little Matthew will not learn to do XYZ) and instead approach it as ""I see Matthew really enjoys dinosaurs, can the dinosaurs count instead of Matthew? Or can Matthew count the dinosaurs?"")
Anonymous First of, you can start by not calling autistic people disordered (the D in ASD). As an autistic person myself, I can tell you that the overwhelming majority of us prefers to be called autistic, rather than being told we have a disorder. Second, ""the signs of ASD"" sound quite alarmist too. But if by signs you mean ""autistic traits"" then these can be plentiful and varied. I suggest not merely judging by observable behaviour, but also attending to what the autistic individual communicates (with words or otherwise). Finally, early detection is only important if you can provide the autistic individual support and understanding. If they grow up with the idea that they are disordered, then it can do more harm than good. It's much healthier to foster an autistic identity, participating in the autistic community and letting the individual thrive in autistic culture. Personally, I would have had a much easier childhood if I had answers for why I was who I am, instead of being yelled at and corrected for it. It is crucial that this comes with acceptance and appreciation.
Cyndi Stephenson So autistic children get proper support. NOT therapies to make them ""less autistic"" but to help them.
Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services Early detection, if coupled with mentorship from the Autistic community, can foster a sense of community, support, advocacy, and hope in families. Children, regardless of neurology, deserve to explore and play without constant direction from adults. Evidence shows that play is incredibly important for development, and engagement in child led play is ideal. Emotional engagement with others close to them is also vital to development. Behavioral strategies often limit a child's ability to explore and engage in play on their terms, and actually limits development of skills. Intensive services should not be behavioral based, instead relationship based and strengths based, with child led play. Consulting with Autistic Advocates can help provide guidance into what programs and services will be most beneficial.

Accessibility: Ensure that screening and diagnostic services are available, accessible, and affordable to all autistic people and their families, regardless of race, gender, socioeconomic status, sexuality, and geographic location.

Respondent Response
Anonymous There is a roadblock to early detection. Developmental pediatricians are typically booked a year in advance. We need funding to make screening easily available.
Michelle Williams Months long waitlists for diagnosis. There needs to be a way to train primary care physicians (if they choose) to diagnose ASD. There aren’t nearly enough specialists able to do all the diagnosing.
Renee Mandell, mother The biggest problem with early detection is financial difficulties.
self-advocate get good quality services to families and children so that they can be diagnosed and start therapies as early as possible. One of the big gaps is the shortage of quality support staff.
Vanessa parrott Earlier screening, shorter wait times to meet with neurologists
Alexandra Hernandez The delay in finding a developmental pediatrician for an evaluation is way too long.
Adam Weinzimer It is imperative that proper screening is conducted, and that the individuals and credentials of those who can diagnose are ubiquitous, in order to avoid 6-12 month wait times to get a diagnosis. These are months and years that children cannot get back.
A.K. As a developmental and behavioral pediatrician working in a large academic institution in a very large city in the south - there is a clear lack of service providers who are able to take new patients who are in need of an evaluation for ASD. This is most concerning for children who are 4 years and under who often remain on wait lists for a year or more. The few providers who are available are inundated with new patients but due to low reimbursement rates from Medicaid, hospital administrators are often not willing to provide the supports to promote the type of accessibility to an initial evaluation these patients need.
Heidi Parr, Case Manager, Seven Counties Services A huge gap is the lack of diagnostic services (without extensive wait list times), as well as covered therapy services (especially behavioral, speech and occupational therapies). These services should be fully covered under insurance, without crippling co-pays
Anonymous Agencies such as First Steps need more funding in order to employ therapists, BCBAs or other Autism experts to help ensure a diagnosis is received by helping education parents/guardians on navigating the system. Early behavior intervention is crucial. Once out of First Steps, there are long waiting lists for ABA therapy. A BCBA with First Steps would be able to train parents/guardians on interventions while waiting for more intensive intervention.
Anonymous Early signs and the need to have an official diagnosis before infants/toddlers can receive the same level of services as a child with a diagnosis. Many times the family is not ready for the label yet would benefit from and agree to the early intervention needed. Funding prohibits many families from getting equitable services (state insurance versus private insurance and private insurance plans varying from plan to plan- some will pay for early intervention without a formal diagnosis while others will not.
Lori, Guardian and speech therapist Especially in rural areas, there are not enough professionals qualified to make a diagnosis. There are also the thoughts that many pediatricians still have that some children just develop slower and that they will ""catch up"" without a diagnosis or intervention.
Katie Vahey Gaebler, Parent and ASD consultant When our childcare center first suggested Autism when my son was 2 yo, they referred us to register with local ChildFind social worker. I didn't understand any signs, and since my son was highly verbal, I played this contingency game (with long waitlists) with his school. due to waitlists and school changes, since he was expelled for aggressive behavior from multiple childcare centers, it took 3.5 yrs for us to garner a diagnosis. Without the diagnosis, no service doors could be open to us.
Margie Williamson, The Arc of South Carolina We need more Developmental Pediatricians in the state of South Carolina. We have incredible EI's that can detect but the waiting list for diagnosis is too long, often leading to crucial time for services being missed.
Anonymous Long wait times (up to multiple years) for diagnostic testing keeps children from gaining access to resources and therapies.
Michael Waterman The diagnosing and screening tools are very expensive and many insurances don't cover them.
Anonymous For my family the process to get diagnosed was very difficulty - from finding a provider to finding affordable options. Most providers charge a minimum of $3000 to get a diagnosis. We were lucky enough to find a grant funded program through the Els Center that walked us through the process- but their funding is limited and we had to wait months before seeing a child psychologist. I am also finding that there are disparities in diagnosing minorities. A couple doctors that I saw really made the process arduous and drawn out to discourage me from pursuing a diagnosis. In Autism we know that early detection and intervention is key and these doctors are actively creating road blocks. I would like for this strategic plan to directly address the issue of providing more access and funds for the screening and diagnosis process and to make services more accessible. Once we received a diagnosis it took us 8 months to access ABA services due to long waitlists.
Anonymous Early detection is important because I waited 16 years and I'm already traumatized enough to deal with suicidal thoughts on a regular basis. Forget biomarkers. Make good information about autism available to everyone, as well as accessible testing centers. If a young kid thinks they have autism, they should be able to get tested with no barriers. Not money, not parental approval, nothing.
Mary McTarsney I'm from a small town south of Indianapolis. We have VERY limited resources here for autism. Getting a diagnoses had been difficult considering almost everywhere that provides diagnostic testing is in Indianapolis and on a very long wait list of up to a year. The autism community could benefit from more locations that offer diagnostic testing as well as aba therapy outside of the greater Indianapolis area. Some families cannot reach a location and to me this is unacceptable. Thank you for your time and consideration in this matter.
Becky Cabe, state vocational rehabilitation services Lack of diagnosis services in state.
Korri Ward, parent, science teacher, local advocate Children in rural Nevada are often diagnosed after the age of six years. EIS gives parents the option of an autism assessment, but not other assessments. Pediatricians do not screen for autism. The Autism Treatment Assistance Program provides some help with accessing a diagnostic evaluation, but the process takes months. Parents are reluctant to take a couple of days of work, find childcare for the other children and drive for four hours one way with a child with autism in the car for an evaluation that they see no benefit in. I talk to many parents and am sad to hear these comments again and again.
Michelle Cheney I am the mother of a 24-year-old son with Level II ASD. My son was diagnosed in Albuquerque, NM in an autism-specific diagnostic setting six hours away from our rural home. We waited seven months for evaluation. No services were available in the interim due to the lack of diagnosis. Once diagnosed, my son had only three months of 1:1 Early Intervention in a home-based setting before being required to utilize a school-based. The school setting that was absolutely overwhelming and inappropriate for my son in countless ways that are too numerous to list given my character limit in this box. Suffice it to say that there is a tremendous amount of significance placed on early detection, leading parents to believe that if they are able to get a proper diagnosis, their child will FINALLY be able to get the services they need in order to ""catch up"" to neuro-typical peers and things will ""even out""; that just doesn't happen. Parents deserve to comprehend the wider picture and the marathon that is autism versus being assuaged by the perception that once they ""do the right thing"" for their child in obtaining a diagnosis and getting services, everything will smooth out and their child will begin thriving.

Co-occurring Conditions: Develop tools to better diagnosis autism when presenting with other co-occurring conditions such as Down syndrome and ADHD.

Respondent Response
Chiara Jaffe, Parent of a 14-year-old with Down Syndrome & Autism Given that autism in individuals with Down syndrome is 10-25 times more common than in the typical population, people with Down Syndrome and a co-occurring diagnosis of Autism should be not only included but actively recruited to participate in Autism research.
McKenzie Hanson I think emotional dysregulation part is the cry for connection of being seen. Attachment theory helps explain this. It’s important for parents to feel agency in getting screened. Many autistic families likely come from intergenerational trauma or family violence. Screening should be focused on how well the child can do things independently. There is anxiety underlying executive function. We need to feel safe to be able to express or connect. Rejection sensitive dysphoria may play into this for some. To know what this looks likes is to ask questions to accommodate moving through the stuck feelings with safety. A lot of autistic children are diagnosed based on the nonverbal aspect or developmental “delays.” I know that autism and adhd overlap in areas, so if there is a way to redirect to focus on strengths such as hyperfocus we could start accommodations from an earlier age. Polyvagal theory helps us understand nervous systems states and if it is used to monitor or identify cues for autism, diagnoses may come earlier.
Anonymous Early detection is critical to preventing a later complex- PTSD diagnosis It's also critical for literally any behavioral health struggles, which commonly occur with ASD, like managing, anxiety, depression, OCD, ADHD, etc

Diagnostic Criteria: Update diagnostic criteria to better identify autism across a wider range of people, including girls and women and people of underserved communities, and include non-behavioral signs such as differences in brain structure and functioning and sensory difficulties.

Respondent Response
Laurence Cobbaert , University of New South Wales (Australia) The core feature of autism relates to atypical sensory processing, both with regards to interoception (internal body signaling) and exteroception (environmental cues). Atypical sensory processing is extensively correlated with an increased risk for mental health issues such as depression, anxiety, emotional lability, and eating disorders. Exteroception is also correlated with creativity and giftedness. Autistic children should receive sensory-based accomodations at school or work, and self-regulation related psycho-education should be informed by sensory profiles. Sensory profiles can be assessed using: - ISQ (interoceptive sensory questionnaire) - MAIA (multidimensional assessment of interoceptive awareness) - GSC (Glasgow Sensory Score) - AASP (Adult/Adolescent Sensory Profile) - Sensory Profile 2 (for children)
Katlyn Autism research needs to be more experience focused rather than external and measurable means. Sounds hard to do with the science/medical model, but those are inherently flawed approaches when trying to understand someones personal experience. Many autistic people do not get diagnosed until way later in life often with many known comorbid conditions, but still feel alienated, isolated, and confused without understanding why. Early detection is important so care is taken to make sure every autistic person gets supported
Star Ford, Divergent Labs Diagnosis tools developed with autistic people should be a priority. Diagnosis has often had the perverse incentives of profit (more people diagnosed earlier to be able to provide more services for profit), so to fix that research must be unaffected by these incentives and be apolitical.
Justin Pimentel There is a major gap in the research and resources put towards diagnosing women and girls with ASD. Fixing this should be a major priority.
Teresa Olafson Neurological and sensory integration variations should be included into the diagnostic and screening tools for early indication and be reflective in early intervention services regardless of a DSM IV Diagnosis. Minimizing chronic stress activation during infancy and early childhood should be the primary focus of early intervention to minimize allostasis and allostatic load damage of developing brain architecture through the inflammatory response system.
Shannon Borg, autistic parent to autistic children Need to have the autistic based signs of autism not the neurotypical signs. Autistic people can recognize each other find out why. Early detection is important to help teach children to cope but also so their environments can be adapted to decrease their trauma to overstimulation.
Anonymous I would be interested in seeing the development of diagnosis and screening tools that are not based in severity but more focussed on the individual’s strengths and challenges eg executive function, sensory issues, emotional regulation, etc
Anonymous The diagnostic criteria for Autism in the DSM are not great, they focus pretty much solely on distress and disregard the important criteria related to positive emotions/behaviors. Fixing the diagnostic criteria is the most important thing because so many people are going undiagnosed because they aren't outwardly showing enough signs of distress.
Anonymous The only aspect of this research question that is not eugenics is ""disparities in diagnosis."" However, diagnostic criteria should center the perspectives of actual autistic people first, using participatory action research, as psychiatry/psychology are engaged in a lot of bad science, and therefore will simply propagate those researchers' opinions. Since autism is as much an identity as it is a neurocognitive disability, participatory action research is actually more valid (culturally, socially, and scientifically) than anything psychiatry and psychology are putting out on their own, or as the lead thinkers/questioners. Participatory action research should center the perspectives of actual autistic people on this issue.

Disparities: Reduce disparities and improve diagnosis, especially for girls and women, ethnic and racial minorities, underserved communities, and adults.

Respondent Response
Anonymous Girls, working class, and racial minorities tend to slip through the cracks and not get the diagnosis or supports that they need setting them at an even greater disadvantage from an early age. For the first three questions my answer is simply NO, this is eugenics.
Yvonne Federowicz Most autistic people are adults, and most adult autistics are currently undiagnosed. Helping adult autistics recognize signs in themselves by (1) improving the broader society's understanding of ""camouflaging"" and its pluses and minuses for autistics, as well as (2) providing enough stigma-free support to adult autistics that people experiencing stress due to unmet support needs wish to subject themselves to the stressful diagnosis process to improve quality of life, and (3) educating behaviorism focused researchers/clinicians on how autistics actually experience life as a marginalized group (there is overlap with the experience of other marginalized groups, but ""acting more white"" would never be tolerated as a training goal for children of Color) -- would be an ethically positive approach for researchers to take. If researchers disagree, please consider that the prevalence of autism is not thought to have changed over time, but little screening for autistics who ""camouflage"" and/or did not fit the young, male, white assumptions of researchers 20 years ago. The math should be simple, yet it seems ignored. A lot of basic common-sense issues are being ignored, perhaps partly due to the unfortunate history of the field of autism...
Margie Bruff, University of Colorado at Boulder Early diagnosis in girls
Jossette Bailey, UNC Chapel Hill One priority/gap I consider important is a reconsideration of the presentation of and diagnosis of autism in young girls. From what I've experienced personally (diagnosed at age 33) and have seen in the online autistic adult community is that many women are diagnosed later in life. The other issue I think is important is how diagnosis is done for adults. It went well for me despite having to complete activities designed for children, but it was infantilizing at times. I do appreciate how my fiance, who I've lived with for 4 years and have been with for 11 years, was able to fill out questionnaires about my behavior since I hadn't lived with a parent in such a long time.
Anonymous Disparities in diagnosis need to be addressed. Figuring out how girls and LGBQ+ people present (it's different than boys) is very important for identifying autism in non-male groups. Everyone presents differently, as ASD is not a homogenous diagnosis, and screening tools and research need to take this into account.
Freda Dias Disparities in diagnosis... greater access for people of color, and increased awareness of gender differences/biases in diagnosis which may cause girls, in particular, to go undiagnosed
Anonymous Older diagnosis needs to be prioritized as well, there are very few people who will diagnose adults, I know families that can't get their kids diagnosed because 5 is ""too old,"" early identification can't be at the expense of people who get missed (who are usually in groups with disparities in access to healthcare).
Anonymous disparities in diagnosis, especially for Hispanic and Black populations. Bias within early detection and familys need mental health supports for themselves beyond support for the child. Research into early parent counseling and training.
Anonymous Autistic girls and women need to be better identified. Their traits manifest differently from males’ and they often mask and blend in more easily. Pathological Demand Avoidance needs to be studied. Children with this profile are often not identified as autistic until much later.
Liz Much of the research in constructing diagnostic tools has been done on males. Females present very differently in autism and thus often do no receive a diagnosis and thus miss out on important services and supports that they need to succeed. Also, more needs to be done in identifying ASD in adults. Adults have often developed coping skills that mask their autistic traits - but just because someone does not present as autistic does not mean that they aren't, and often are struggling but aren't getting the support that they need to improve their lives.
Danielle Witt My biggest concern in this area is the gap between genders. My son was screened no problem at two, but my concerns with my daughter have been brushed off by doctors. Also I feel like sometimes the screenings don’t accurately represent the individual. My son who clearly has ASD “passed” an autism questionnaire basically because he was doing so well and the school used this questionnaire to try to take services away. They also wouldn’t accept anything from a doctor.
William Ash I think you need to broaden this questions as it assumes ASD is simply a childhood condition. I was diagnosed with ASD at the age for 56. There is a large population of undiagnosed adults.
Sullivan Swift, Autistic, Community Organizer, Researcher So much research is done on white, male children, and later on white males who speak or are perceived to have minimal impact disability from their autism. Research needs to expand to include all genders and races, feedback from autistic adults, especially for services they received as children, speaking and non-speaking autistics, and those with a range of life experiences and identities. Of particular importance will be having autistic researchers involved in the work being done, and community based research practices implemented where ever possible.
Trisha Gallagher, Public Special School Principal Disparities in diagnosis.
Anonymous (1) Early identification and treatments for those who are nonspeaking, and (2) identification and supports/services for underserved groups like rural and indigenous families.
Florencia Ardon Disparities in diagnosis is a very important issue. Females and minorities are very much underdiagnosed and thus don't receive the appropriate accommodations and services.
Anonymous Many times for autistic females we get misdiagnosed with BPD when in fact they are autistic. Females seem to fly under the radar because we mask so well to ‘fit in’.
Anonymous While I agree with the focus on early diagnosis for young children, we also need to improve diagnosis for autistic adults. We have generations of undiagnosed autistic adults struggling and slipping through the cracks, and we need to develop better diagnostic tools and remove barriers to diagnosis, especially for adults who are not white and male.
Julie There needs to be research done on adults with autism. People still believe it’s a children’s disability and it’s not.
Hana Gabrielle, Wells Fargo Autism researchers fail to include autistic people in their research studies and emphasize their efforts on the biological causes of autism with the promise of eradicating autistic people. Autism Speaks doesn't have autistic people on their executive board and lots of researchers get inspiration from Autism Speaks. The Autistic Self-Advocacy Network is run by autistic people and it advocates for disability rights. Autistic women and girls get diagnosed much later compared to autistic boys and men. Those who are diagnosed later in their life don't get adequate support for social skills and some institutions still think it's okay to use electroshock devices to get people with invisible disabilities to comply to neurotypical behavior. There are racial disparities when diagnosing autism. Autistic people that aren't white are put down by racial stereotypes and it costs thousands of dollars to get a clinical diagnosis of autism in the first place. Plus, there are AI researchers who are trying to help. While this may be more time efficient, there isn't a psychologist who specializes in autism to help them, plus the DSM-5 criteria is meant to catch autistic boys who like trains. Plus, why can't autistic researchers have their own say with their own condition? Sexuality and autism are closely connected and that should be validated instead of questioned.
Sonya Emerick I live in Minneapolis, and in my school district—in a city still heavily impacted by the red-lining, with some of the worst racial disparities in the country—children of color (especially Black children) are incorrectly designated to have the special education label “EBD” (emotional/behavioral disturbance) when they may actually qualify for an ASD label with or without additional labels. The EBD self-contained (segregated) programs are clustered in neighborhoods of color and in poor neighborhoods. Early identification must include equity in identifying BIPOC kids. This means increased cultural competence in practices used for identification. It also means increased competency to understand the intersection of racialized trauma and autistic trauma and how a child with experiences of that intersectional oppression may observably demonstrate autistic embodiment.
Lisa Nieman, Parent I think the signs need better definitions, because I'm concerned that the common signs we look for are seen most prominently in white males, and boys of other races and ethnicities and girls in general are being missed, or given a different diagnosis such as Oppositional Defiant Disorder or Intellectual Disability. Early detection is important so that children can get services and accommodations they need to access their education - both academic and social. I believe any therapies should be tailored to individual needs, rather than a blanket recommendation for all children identified with ASD since it presents differently across the spectrum.
Meg P Good diagnostic tools, especially for girls. Services can be more effective due to early detection.
Eleanor Wildflower Individuals assigned female at birth (AFAB) are understudied and under-diagnosed. It is especially hard for AFAB adults to obtain a diagnosis, making it difficult for AFAB people to get accommodations or supports. The IACC should focus on studying how autism spectrum disorders present in AFAB individuals.
Frank Easton At this point I think women and minorities need more attention, we white men seem to have the easiest time getting a proper diagnosis while gender and cultural differences leave women and minorities at a disadvantage.
Isabella Blake I think action should be taken to close the diagnosis and support gap for autistic people from underdiagnosed groups such as autistic girls/women, autistic people of color, undiagnosed adult autistics, autistic children from low income families, etc.
Helen Leung Creating screening tools for autistic people in BIPOC communities, screening tools for girls and women, diagnosis in adults, increasing access to diagnosis for marginalized populations
Anonymous Disparities in diagnosis. Diagnosis is very subjective and can often overlook or underestimate certain demographics.
Anonymous Better diagnoses criteria for different population (i.e. black autistics)
Alexis Oliver Williams Gaps for services for young adults (other high school) and older adults. Gaps in research for persons of color and women/girls.
Christina-Marie Wright, North Central Washington Library for Education on NeuroDiversity (NCW LEND) Research has begun to recognize sex-based differences in presentation of autistic behaviors, with an emerging “female autistic phenotype” alongside a “male autistic phenotype.” Research also suggests that autistic people are more likely to identify as genderqueer than the general population. Therefore, the question I have (and am beginning to explore in my research fellowship) is: Do one or more genderqueer autistic phenotypes exist? If so, what do they look like?
Allison I think the biggest issue with diagnosis is failure to diagnose girls and gender non-conforming children. I was lucky enough to be diagnosed as a child, but many girls aren't diagnosed until adolescence or adulthood. The reasons for this include: girls having symptoms that don't match the ""standard autism presentation"", girls masking their symptoms, professionals ignoring symptoms or mistaking them for something else, and the belief that autism primarily or only affects boys. Without a diagnosis, autistic kids won't get the right therapies. They may wonder what's wrong with them. They may struggle to finish school or find a job. This leaves many autistic women in a difficult situation.
Anonymous adult diagnosis in women, slipping through the cracks
Aerienne Amadis-Noel Fey, Autistic (ASD 2) Services for adults, support for adults, less pathologizing and more accommodation, understanding and support.
carol staszewski Disparities in dx especially for women and even more for older women. Providers on autism agency list ran gamut of 'i can tell by talking with you (on the phone) that you're not autistic' to an in person psychiatric and neuropsych testing, 'you must be squarely meet dx criteria for autism (PDD) age 65...with devastating impact on your life and career.' These after years of multiple psychiatric dx's none of which seemed to really 'fit' or account for the kinds of difficulties that were arising throughout the years. This is a common issue for many women in my several aspie women's support groups.
Sarah Zate, TTUHSC El Paso A validated tool for self-diagnosis for adults
Sandra Lee, Autistic adult More focus should be placed on recognizing autism in BIPoC, as well as in girls and women of all races.
Paul Garland Many people on the autism spectrum have sensory issues. An individual may be hypotensive or hypersensitive. As regards how fabrics feel, such as clothing, bedding or soft furnishings, the issues can be about how smooth or rough an item is, whether it is warm or cool, is it heavy or light, stiff or supple and so on. The stress of getting it wrong reduces an individuals ability to cope, making their autism more obvious, whereas getting it right, by accident or design, can result in masking and in consequence a delay and/or a reduction in the correctness of any diagnosis. Examples include benefits from sleeping under a weighted blanket and wearing compression underclothes. Given that western cultural norms see many more females than males wearing tight fitting clothing without having an autism assessment, to what extent does wearing tight fitting clothing increasing masking in females and could this be one factor in the data where 4 times more males than females receive a diagnosis and therefore identify one example of gender bias which could then be eliminated, improving diagnosis?
Aishah 1. Some of the key signs and recognizing autism at a younger age especially when it comes to children assigned female at birth is taking a note and the small things. Nuance key especially when I was little. The media tends to portray quirky girls and women as there’s normal anomaly that’s very lovable, but the truth as a lot of these quirky traits are autism presenting itself. And some of the particularities about a child’s sensitivities may be sensory issues presenting themselves in a way that you may think are cute bite souls take seriously. Another thing you may noticed with children that are female is having really big emotions and really big dramatic sensitivities to little things that you do. It’s really important that you don’t diminish this and you validate this especially if you suspect that your child may be on the spectrum.
Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin Early detection remains an area in need of focus. We also believe that expanding work on detection to focus on underserved and/or marginalized populations would be beneficial. This includes females as well as rural and BIPOC populations, and the economically disadvantaged. When working with individuals in the BIPOC community, awareness of culturally appropriate engagement will be necessary to optimize care.
Avery, I'm autistic Research should focus on disparities in diagnosis and identification of subgroups (assuming that means ""different ways autism can present in different groups of people"").
Danielle Davis, N/A More research needs to be done on the female autism phenotype. Females manifest symptoms in different ways and are vastly underdiagnosed and misdiagnosed because the current autism traits are all based on years of research that has little external validity because it does not generalize to the rest of the population outside of white young males. FIX THIS
Anonymous Disparities in diagnosis
Anonymous early signs and biomarkers specific to females with autism
Corrie Whitmer First, what issues/biases exist in current screening tools. Specifically, I think it is important to investigate whether current screening tools are able to diagnose AFAB, intersex, and BIPOC autistic children with the same accuracy as they do white AMAB children. Related to this, I would like to see more research into the factors that influence underdiagnosis/late diagnosis in various minority populations, and into methods of addressing these issues.
Anonymous More focus on identifying women/nonbinary autistics. Also adults who missed earlier diagnosis
Anna R Myers Women, minorities, and adults (when missed at a young age) are hugely underdiagnosed there should be more focus on looking at how autism appears in groups other than cis straight white boys of a young age. And a push to actually diagnosis people of other groups and believe their symptoms.
Aster The most important part of this subject is how diagnosis is most easily given to white male children. It is important to understand if there is an actual difference in frequency, and if not, why it is harder for autistic people who are not white and male to receive a diagnosis.
Anonymous Greatest disparities in diagnosis are between girls and boys, and white children vs Black and POC. Closing this gap should be the highest priority in early detection.
Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force Research shows that early diagnosis of and interventions for autism are more likely to have major long-term positive effects on symptoms and later skills. We also have some data (but not enough) to show that children of color, girls, and non-English speakers are frequently not identified, under-identified or mis-identified. Given what we know about the importance of early identification, this inequity leads to poorer outcomes for these children. If we want to be a society fully accepting people with ASD, then we must increase our understanding and develop services and supports to address these inequities. Related to these gaps, we additionally need to identify the downstream effects of later or missed identification for these underserved populations.
Kim Musheno, Autism Society of America Significant issues in recognizing signs of autism and steps in early detection for parents of color and those who are economically struggling require rapid attention. We have some data (but not enough) to show that children of color, girls, and non-English speakers are frequently not identified, under-identified or mis-identified. Given what we know about the importance of early identification, these inequities lead to poorer outcomes for these children. In many school districts Black children receive categorical autism services at rates far below those of white children. This not only deprives these children of access to evidence-based autism services but deprives their families of the critical information about the nature of their child’s disability and the availability of effective treatments. It also denies many children access to insurance-funded therapies, causing them to miss therapy during the critical “window of opportunity.” We must better understand how to reach out and serve underserved populations. If we want to be a society fully accepting people with ASD, then we must increase our understanding and develop services and supports to address these inequities and do so as a highly-ranked priority.
Anonymous More needs to be done to address racial and socio-economic disparities in access to early detection and support for autistic children and their families.
Anonymous There must be more attention for Autism in girls and women, as it is often badly recognised in them and as a result they go under the radar until later in life.
Skylar I think there should be more focus on diagnosis in teens and adults. It would greatly benefit people to know early on that they are autistic, instead of feeling greatly isolated from society throughout their developmental period. Also, it is greatly damaging to separate autism studies by gender, both for cis girls/women, and also for any trans/nonbinary/gnc autistic people.

Early Screening: Implement universal screening and develop tools to diagnose children at an earlier age.

Respondent Response
Zahida Chebchoub All infants and toddlers should go through screening for ASD. It should be a routine check just like any other screening for infants and toddlers.
Marie Cullom Better screening at pediatrician well checks and preschool screening. Better access to care for ALL individuals. There seems to be a lot of inconsistencies with testing. Who qualifies for testing and who does not. Diagnosis at a you g age versus older individuals. Why are there so many gaps? Should there be more screening in schools?
Emily, Mother of an autistic 4 year old. I think instead of waiting for a child to turn 3 to be diagnosed it should atleast be 2 years old. The signs are quite clear early on for these kids. Around 6 months you begin to notice. Not meeting mile stones is definite giveaway.
Stephen H Bradford Pediatric screening, rather than language acquisition. My son was diagnosed as PDDNOS, and that diagnosis was limited at the time. Early intervention could start earlier if diagnosis was done earlier. There should be some type of diagnostic test that differentiates ASD from the normal spectrum at age 2 or 3 which would allow for early tracking and intervention.
Hillis Wetterer Early detection was key in my son's diagnosis. Work needs to be started as soon as diagnosis begins.
Anonymous Early detection is important because after suspecting ASD in their child the parent will have to wait for a diagnosis and then therapy, this process can be long. In my family’s case in August of 2020, we began the process, received diagnosis in July of 2021 and therapy in September of 2021. Therapies are most effective when done as early as possible. Time lost without detection is also time lost without therapy.
Annette Raia, Parent Diagnosing as early as possible. Having resources available for parents who hear that their child has to be evaluated.
Anonymous All children who guardians believe there is difference like delays should be given the assessment to assure that if ASD is the disorder or even another intellectual disability that services are provided as early as possible.
Michele Mann, ECD Connections I feel an integration of Provider 50 Services and Early Intervention would vastly improve early detection and services within a timely manner. I believe that if you want to focus on earlier identification of kiddos on the spectrum, you should piggyback the efforts already being made through Early Intervention outreach and child find. Adding identifying questions within screening tools already used to identify children who might be in need of Early Intervention.
Josh Compton Parents and children benefit when pediatricians include autism screening as a part of early wellness visits. Parents should be informed as to the purpose and benefits of these screenings, and if concerns are raised, thoughtful, theory-based information should be provided immediately, along with clear guidance for next steps. Following up with parents is crucial.
Anonymous We need to provide diagnosis and screening tools to pediatric providers and facilities. We need to routinely screen for ASD / IDD just as other pediatric conditions during their physician visits. Early intervention is our best avenue to diagnose and begin services.
Cheryl Early detection is important on any disease. What the government and insurance companies offer might help the very mild cases of autism but no where near enough to help the severe cases. It’s not very difficult to diagnose autism especially when it’s severe.
Anonymous Schaaf-Yang Syndrome When and how will genetic screening become as routine as PKU and the like?
Harold M. Frost III, Ph.D., University of California (retiree) BACKGROUND -- This comment refers to Question (Q) 1, ""How Can I Recognize the Signs of ASD, and Why is Early Detection So Important?"" It supplements 2 comments I already submitted earlier in response to Q’s 2-3, viz., Q2 ""What is the Biology Underlying ASD?"" and Q3 ""What Causes ASD, and Can Disabling Aspects of ASD be Prevented or Preempted?"" These 3 Q’s & 4 others are in panel ""2016-2017 IACC STRATEGIC PLAN [ISP] OBJECTIVES,"" pp. viii-ix, ""ISP on ASD, 2018-2019 Update."" (Shorter version of all 7 Q's: Fig. 2, p.38, ISP, with 2016 funding in Fig.5, p.42 & funding trends in Fig. 6, p.44.) Present comment focuses on boosting part 3 of Q2, ""Support large-scale longitudinal studies that can answer questions about the development of ASD from pregnancy through adulthood and the natural history of ASD across the lifespan."" COMMENT: Zero in on part 3 of Q2 & increase funding to better carry out part 1 of Q1, ""Strengthen the evidence base for the benefits of early detection of ASD."" Guideline to do this: Fund equally research to answer Q's 1-2. Per Fig. 6 in ISP for 2016 funding levels of 130M for Q2 & 30M for Q1, the equal level guideline means 80M for each, adjusted for 2022 dollars. Major change in ratio of funding Q1 vs. Q2 accommodates new work needed to associate environmental exposure factors (like prenatal ultrasound) during pregnancy to gene expression changes which may lead to delayed development in early childhood first picked up by expensive behavior testing.
Anonymous We need universal screening for ASD in the elementary schools. Ideally screening would be conducted every year. If this is not possible it must be done in the 1st and 4th grades at a bare minimum. This will ensure that screening is conducted at the beginning of elementary school, when the gap in development of age-appropriate social skills between ASD and non-ASD children begins to widen at an accelerated rate, and again a few years later to identify those who were missed in the first round.
Lucy Flanagan We need to fund the studies (there's one in England) showing that autism can be definitively diagnosed with MRI.
Daysi Jimenez El retraso en el lenguage y habla. El poco convivio conmigo y otros No señalar El dx temprano ayudo a habrir puestas a terapias y oportunidades para mi hijo y para mi como madre. Aprendi y sigo aprendiendo como criar a mi hijo mejor conociendo su neurodiversida. Translation: The delay in language and speech. The little coexistence with me and others. No signaling. The early dx helped to open therapies and opportunities for my son and for me as a mother. I learned and continue to learn how to raise my son better knowing his neurodiversity.

Education and Stigma: Educate the public on what autism is and reduce stigma around the diagnosis of autism.

Respondent Response
Michael I am no expert, but my son is on the spectrum, and I have read from many sources that early recognition and early intervention is important. There is a stigma and a lot of fear on the part of parents to receive an ASD diagnosis. There is even denial that anything is wrong. I believe (from my own experience) that good work done to destigmatize the ASD condition, and education of parents about warning signs and the importance of early diagnosis (and subsequent intervention) would help. Also, while there can be disparities between multiple separate diagnosis, we felt it was important to get a second opinion and were fortunate enough to find that option. It seemed to us that the disparities were mostly around the severity of the diagnosis.
Kevin, Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) Most people have a stereotypical view on what Autism is. This general consensus among the public is garnered by the most commonly and heavily shared information on Autism. In summary and essence, a significant fraction of the public, including significantly many public officials such as police officers and attorneys as well as those without any basic education and exposure to information on Autism or experience with those with Autism generally attribute Autism to children having inadequate social skills, unusual mannerisms, peculiar behaviors, and general awkwardness. Attribution to adults is typically not made unless it fits within their own perception being that the person is with their parent and acts very reserved. School Districts should be able to identify these individuals and not hinder their assimilation into society through transfer to specialized classes but assist and counsel them as they struggle through various challenges. This was true not only for me, but as I have seen in other Autistic individuals, especially men: A serious struggle and difficulty attaining not only close relationships, but intimate ones. Having a good counselor or support group who can assess hidden or evident issues is critical to establishing social issues early on and documenting them.
Christine Corcoran, Mom Lack of eye contact and repetitive stimming with a straight object (stick, pencil, crayon, etc) was our first sign at age 3. Though my son was not formally diagnosed until 4, I began sign language, the use of PEC cards, and other tools with him immediately. The diagnosis was early and accurate, in our case, anyway. I think the of parental education and lack of acceptance is the main key in obtaining early intervention. The stigma is something that is hard to get over, and many parents refuse to accept that the dreams they had for their child may have to look a little different. My son is now 18, and he has been able to integrate into mainstream classes and getting straight A's! (He has been fortunate to have an amazing group of teachers, and I learned early on how to advocate for him.)
Mollie The general view of autism as a pathology with symptoms contributes to the stigma in society. It also fails to recognize the many undiagnosed autistic individuals who seek mental health support throughout life with little relief. The pathology is not in the autistic brain, rather in society's treatment of autistic brains. NO to identifying biomarkers because that's eugenics, and autism is a naturally occurring variance in human neurology
Emma Jiao-Knuckey I think everyone (PNT and ND) would benefit so much from learning about neurodiversity right from the very start. Not only does it mean signs of being ND are seen but everyone actually understands that its absolutely okay to be ND and that it can be a positive thing
Lynea Laws, Ph.D., Zeta Phi Beta Sorority, Incorporated Recognizing signs of ASD is not always an easy task. Recognition takes awareness, education, and experience to be able to ascertain the signs. The more education inserted into minority communities, the greater the increase in early detection which means improved life experiences and health. Early detection is extremely important because it makes the difference in an individual’s ability to develop to his/her fullest capacity. Without early detection, there is usually a significant delay in formal diagnosis, services, and support. Statistically, African American children are delayed by at least two years in receiving a diagnosis. This delay can be attributed to several factors – parent’s lack of knowledge about developmental stages and their signs, parent’s denial, and lack of insurance and funding. The importance of early detection assists with autism-appropriate education and support at key developmental stages. Individuals appropriately diagnosed are more likely to gain essential social skills and interact better in society which also benefits the parental relationship with their child.

Subgroups: Improve the DSM definition of autism to better reflect the wide spectrum of abilities and challenges across the autism spectrum and include or remove subgroups in diagnosis and research.

Respondent Response
Sue Yacovissi, parent DSM is very vague in connecting to describing symptoms of Autism. Does it have a diagnosis separate from mental illness? self-injury symptoms.
Sharon Montgomery, U.S. citizen Identification of subgroups
Jamie Doyle While the DSM classifies autism into three levels, there is little doubt that subgroup heterogeneity exists. Research should be directed toward identifying and classifying autism subtypes to better trailer treatment and service plans. Identifying subgroups could be accomplished using machine learning approaches of large representative, population-based data.
Tom Rickels, X-Excel (day services provider) Identity of sub-groups, much attention is is paid to high functiong autistic people but until recently (National Council on Severe Autism) people with severe needs were ignored in the converstation.
Anonymous Identification of subgroups is very important. We did the autism community a huge disservice by collapsing the spectrum into one single diagnosis of ASD. People with the (former) Asperger's diagnosis have very little in common with those who have classic/severe/profound autism. Also, identify the differences in those who regressed into autism in childhood vs. those who did not follow a normal developmental path from birth. More clarity and awareness about differential diagnoses. Some people who self-diagnose claim to have autism due to their (self-identified) symptoms, yet have not been formally diagnosed by a trained medical provider. In reality, many characteristics of autism are present in other neurological/mental health conditions, and is important to get the correct diagnosis to choose the best treatment plan.
Tom Whitehurst One of the most important policy issues, which I realize is beyond the IACC's immediate scope, is for a major realigning of the DSM - 5, returning to something closer to previous systems that recognize real autism from Asperger's r whatever it is going to be called.
Crystal separate severe autism diagnosis from asd
Michael Walzer, The Hidden Gifts Project I come from an Asperger family of four. Both my sons, older brother and I, ages 64, 62, 22 and 21. We are high functioning. No one has ever detected our autism. We are seen as nuerotypicals. I have met other Asperger?s who were diagnosed as high functioning, but they express themselves with noticeably autistic behavior. My sons spent time with other Asperger kids, but could not connect. because there was an obvious difference between my sons? diagnoses and other kids diagnoses. It?s like teenagers trying to hang with preteens. There is no negative judgment, but there are variable levels of Asperger?s. Enough that some Asperger?s cannot relate with fellow Asperger?s. Lumping all high functioning people together sabotages our tribe. There are many of us who have adapted and adjusted in the neurotypical world. We are the most neglected, because we are seen as almost normal. We still need acceptability, respect and equality from society. We are the ones who will lead our tribe to the promised land. We are the guardians, because we have a foot in both worlds. (Autism/neurotypical world.) We need more clarification to what high functioning means. This is not about egos or personal gain. Having our own diagnosis will help establish our position in the autistic and neurotypical world. It?s the same as having mayors, governors, senators and a presidents. All are important, but there is a pecking order. You would not go to a mayor to seek out wisdom concerning foreign affairs, would you? I believe all autistics should have a voice, but the high functioning autistics like my brother, sons and I are the Segway (the eyes and ears and thinking process) of our tribe. Give us our recognition and we will change the world.

Training: Provide additional training for parents and caregivers, healthcare providers, teachers, and other public servants to better identify signs of autism.

Respondent Response
Chris Colter We need to get pediatricians some training and diagnostic criteria for autism. Here we are how many years after the first diagnosis of autism and pediatricians still don't know what to do. THAT is the biggest gap. Parents are having to do their own research because regular MD's are not versed on autism. Give the screening tools to the pediatricians because they are the ones on the front lines and see the children on a regular basis. Pediatricians need to be taught in med school about autism instead of having to do secondary education on it. Parents and Pediatricians need direct access to the latest research on autism. Parents know their kids best and can help the doctors if they have access to this critical information.
Christina Newendorp I feel like we still need better training for pediatricians and the use of screening tools such as the M-Chat to recognize the signs of ASD. I also think we need to separate out severe autism from milder forms in the DSM-6 so that the focus can be on diagnosing severe cases at younger ages. I am a special education teacher at the elementary level and we are still routinely finding children who were not evaluated privately through their pediatrician's recommendation when they reach Pre-K or K in the school system.
Anonymous More education in Medical Schools & in Pediatric College of Medicine-20 years ago parents were told it was just being diagnosed & a vaccine was not a threat but a lie by a Dr. paper. All of that has not helped educate current practicing physicians understand the behavior as these babies grew into adults that intake @ ER’s they can’t take a temp or blood pressure on! This population isn’t well understood & is pushed on caretakers to provide basic needs as well as how to do vitals most times…parents should not have to educate the Medical Staff how to treat these patients!
Danielle Draut I believe even the child displays characteristics the treatment for autism is the same. They should start early. I think many kids get missed and are not diagnosed until late teens or early adults. I think the focus needs to be on those individuals that are not as severe because they often struggle with fitting into the world and functioning as a regular member of society. Perhaps more support and tools would benefit those individuals. Many parents think if their child is talking but just shy that it could be just them when there are other signs
Parent Early detection is important to be able to maximize service time. One thing that is important is for doctors, service providers and schools to believe and trust the instincts and concerns of parents. There have been many instances where ""experts"" downplayed parental concerns or felt they knew a child better than the parent.
Erin, Parent We need more providers who can evaluate and diagnose to alleviate wait lists for diagnosis, which in our state are a year or more. Providers also need greater understanding of autism signs and diversity of characteristics in autism.
Peggy Wargelin, Parent with 18-year-old child with Asperger's diagnosis My daughter was identified at her preschool at age 4. It was extremely helpful to find out so early. I think any help that can be given to child care and preschool employees would be very helpful. It was wonderful to be able to have paperwork in place before my child entered the public school system, and getting testing and understanding her issues was helpful to me as a parent.
DeLanie Brewer, Mother of son with ASD It is imperative that the signs ASD be detected as early as possible not only for the child but for the family and all caregivers involved, as well. As a parent I cant begin to count the number of frustrated individuals we've left behind shaking their heads at my sons ""behavior"". Including myself, sadly. He was most commonly dismissed as a difficult, fussy, agressive child who I had spoiled and was now out-of-control. Had there have been MORE public awareness about ASD, people- including Myself, would have had a clue. I believe life wouldn't have been as challenging for my son. That was 20 years ago when the Dr's didnt even have a clue. It has gotten much better, but we have a lonnng way to go.
Jessica Easton Older practitioners need to be retrained on what to look for. Many are looking at old standards and stereotypes.
Anonymous Today there still is a great amount of mental health and psychology professionals who are not adequately educated on Autism Spectrum Disorders. Autism Spectrum Disorders are not a mental health diagnosis and yet our health systems including Medicaid and Medicare treat people with Autism as if they have a mental health condition. Often time already diagnosed individuals will have their diagnoses ruled out by inexperienced mental health practitioners who instead diagnose a mental health condition with similar traits and behaviors. We need to better regulate who can diagnose people with Autism so we do not have as many cases of unqualified mental health practitioners ruling out existing Autism diagnoses by qualified providers and in turn causing loss of services for autistic individuals.
Jenell Early signs and symptoms are key! Our son regresses at 15 months and we were constantly reassured by doctors, therapist and well meaning professionals that we should “wait and see”. We lost a lot of time using that approach. Early intervention it’s really important. Had the professionals had more training and been able to identify the signs, our son would have begin getting help way earlier.
Shilo Liebau, parent I think that their needs to be more education within the medical community as well as with parents/teachers. My son was diagnosed when when he was almost 5 which i feel is way too late.
Peter Mazure, Parent; Chesterfield CSB General practitioners and pediatricians should receive more hours of training on Autism in medical school.
Jennifer Dapkins Better training on identifying Autism ALL MEDICAL and DENTAL personnel EMT’s Reception everyone working in a medical field regardless of specialty More training within society Teachers Police Fireman
Janay We need better and more consistent tolls being used for early diagnosis. When we miss the diagnosis or misdiagnosis a child, we are not allowing the family and child to receive the services necessary to give the child a level playing field with their peers to have a happy and productive life. In order to provide more effective testing, we need a tools for the general pediatrician to do regular checks on how the child is progressing using this consistent tool. Pediatricians need more training around ASD and how to identify. Waiting years to get into a specific group that provides the testing hinds the child's progress.
Barbara Langston, Parent Early detection is #1 because a person with ASD learns different things in a different ways from the time of birth. Once language is expected, an inability to communicate *normally* causes huge, lifelong problems for the person & their family. Because the person can not make their needs known in the *normal* way, but they have not been diagnosed, the understanding of others is based on looking for *normal* speech & language communication. Misunderstanding is seen as non-compliance by parents, and is felt as not getting needs met by the person. The anger, frustration & demands for intervention become a nightmare neither the person nor the parents will ever completely overcome because of the permanency of this developmental issue. Disparities in diagnosis occur when the definition & symptoms of ASD are changed & people doing the referrals for diagnosis aren't aware of what the early signs are -- or worse, when they don't believe it's an issue. Training everyone who has part in the recognition of the early signs, beginning with those most likely to SEE them is just plain logic. That includes parents, pediatricians, teachers in early school grades & school psychologists. The least likely to accept learning are 1) many teachers who believe their job is only to teach in normal ways & do not desire to learn more, & 2) many parents who want their children to be *normal,* & so resist learning or identifying early signs.
Carol Tatom, Autism Response Team I think there is a lot of stigma still with having autism that prevent many families from seeking care in children that are at-risk for autism or show early signs of autism. I think the M-CHAT-R should be something that every parent has access to. The M-CHAT-R can be used in children ages 16-30 months and can help assist parents in what to look for if there are concerns about autism. The M-CHAT-R can also be found online at Emphasis on early detection in at-risk communities should be prioritized so that these families are able to get access to accommodations, services, resources, and support that positively impact the future of that child in addition to building and increasing resiliency factors for at-risk families.
Deborah Pediatricians need more education on early diagnosis
Colleen Allen, Autism Alliance of Michigan Early Detection should remain a priority for the IACC. Outcomes for children are significantly improved the earlier the age of diagnosis and entry into evidenced based services. However, community based, easy to use screening tools for those individuals who most often interact with young children are not readily available or utilized. We need more training for early childcare workers (a workforce without even basic training in child development and recognition of early developmental delays), caregivers, educators, etc. Additionally, mandates versus guidance is needed. Implementation fails when screening is not mandated as part of standard employment for childcare workers, community based recreation centers, educators, etc. Accessible, easy to use resources, disseminated widely for caregivers is also needed.
Dani Sellmer Knowing not so common signs or signs of ASD in PDA or Asperger's children would help parents and caregivers diagnose earlier. Not every child shows the typical signs of autism. This would be crucial in early diagnosis which is so important to both the family and the children. Undiagnosed children can suffer misplaced discipline and unnecessary stress because caregivers are unaware of what is causing their behavior. Early intervention has also proven to be very beneficial. In diagnosing, we should look at how labeling or giving a child an ASD ""score"" is harmful and limits services.
Anonymous Early intervention is key to supporting students and families with ASD. There needs to be more resources for families to learn about early signs of ASD. This includes supporting pediatricians in informing families at monthly/yearly wellness visits.
Marc H Joseph I don't there's enough awareness or guidance when it come to sign and symptoms to look for.
Lucas Kunach, Fraser Please add as a focus: -- Creating more pathways for families to ask questions and get their early concerns addressed
Anonymous I know our district does a child find to help identify children with all disabilities early but we still miss kids. More information from pediatricians during those early visits might help.
Yolanda HollerManagan Education in the community regarding early intervention-that parents can self refer. Also it is important for there to be more school psychologists who can diagnose
Edythe Koerber , Mother It is so important for public schools especially to know and start right away working with that diagnosis for the good of the child.
Anonymous Autistic people attending private or religious schools might not be diagnosed.
Dax, Autistic Self-Advocacy Network, Volunteer Doctors, especially non-specialists, need to be educated to remove stereotypes that pose barriers to diagnosis for people who do not fit the stereotype of an autistic person: A nonverbal young, white boy. Black and brown children, girls, and adults with autism don't look like that stereotype, and their autism is often overlooked, especially by doctors who do not specialize in autism and do not even know enough to correctly refer someone to an autism specialist.
Jennifer Reppond, parent of ASD teenager / doctoral student There needs to be professional development training for general education teachers. I am part of a lot of autism circles, there are still parents not getting their children diagnosed until late into elementary school and even middle and high school. Autism should never be caught in high school; there is not much time left for years of intervention training at that point. Doctors and Psychologists need not be the only ones we run to for diagnosis, especially when wait times to see these practitioners can be months or years. There has to be training in the schools so that teachers can catch on early. And, when autism is suspected, waiting until the ""official"" diagnosis is a waste of time for the child in question.
Sarah Conn, MS, OTR/L , CDPVTC Early detection is so important in the ASD population because then you can start implementing treatment techniques and collaborate with parents in order to meet the person's needs. Early signs of ASD may be noticed by parents or teachers. For example, the child may avoid eye contact or not want to interact with other children. In school, the child may not want to engage with peers, participate in classroom activities or appear to ""act out"". The Sensory Motor Checklist, as well as the Child's Early Development Milestones could be used to check for any traits that are outside of the ""norm"".
Becky Rosenberg, Partners in Policymaking (Maryland) How are medical professionals trained in early detection as well as family supports? How are families to get support while waiting (often long periods of time) for evaluation?
Sydney, Autistic More attention needs to be paid in training general education teachers to recognize signs of autism, and to make sure they have an up-to-date and de-stigmatized view of autism. The IDEA says that all students showing signs of a disability, regardless of severity, have a right to be fully evaluated for an IEP. This promise is not being fulfilled. The current system of diagnosis and service provision for autism relies heavily on teachers to be “first responders” in recognizing the signs, yet most teachers are woefully unprepared for this responsibility. Most parents and other professionals reasonably presume that teachers, people whose job it is to support children’s learning and development, would be adept at recognizing even subtle signs of learning and developmental disabilities. Alas, they are not. This must be rectified. This issue has significant implications for families of lower socioeconomic status who may not have sufficient health insurance and/or financial resources to take their child to a developmental specialist; they therefore are fully reliant on the public schools to recognize the signs of a disability and provide appropriate evaluation and services.

Current Priorities Still Relevant: The Objectives as they are stated in the Strategic Plan reflect important current topics and issues in the field.

Respondent Response
VIRAJ D. VYAS, PSW, CHW, Job Coach, A volunteer Advocacy Ambassador for Autism Speaks. Signs of ASD 1) Reduced eye contact 2) Social withdrawal 3) Sensory issues like sound sensitivity, hand flapping... 4) Sleep disturbances 5) Hyperactive 6) Do not pay attention and follow instructions 7)Temper tantrums 8) Loss of speech and hearing issues like language processing problem 9) Stimming and rocking back and forth. 10) Banging head. Early Detection: 1) Help a child to live healthy life and create healthy society. 2) A child can get an appropriate treatments to help with challenges. 3) Early intervention can help children to reach their full potential.
Raliat M. Bello Very important so treatments can begin early for the child.
Angel Holladay I feel the most important priorities are screening tools and a non-confusing diagnosis tools that better describes the levels of autism.
Leona Schlesna My Grandson is 13 years old and still is not definitely diagnosed as autistic. Now he's being diagnosed with Lennox/Gastaut syndrome. We need better diagnostics.
Galaxie As a parent you will always know something is different in your child. You will see them act differently from other children their age. Early intervention is important because you can provide them with the therapy they need.
Nicole Shelton, AdvocacySD Disparities in diagnosis, physicians and schools using screening tools and diagnostic tools. All of this needs to be boosted
Catherine Pinto, Parent Intensive early intervention has the most powerful impact on the child’s progress.
Suzi Hiatt, parent & service provider Capriccio Elite, LLC Early detection is important so that training and support can be offered and provided to the family to make the needed adjustments to maintain family stability. The stressors of a special needs child in the family can be difficult for all, including siblings.many families need training to develop consistency, coping strategies, and balance for all.,
Tonja Nolan, independent The most important priorities I see are diagnosis and screening tools along with early signs and biomarkers. I was not diagnosed until age 52. My son, despite my repeated efforts to have him tested at elementary school, middle school, and high school, was not provided with diagnosis or screening tools and I had to pay $4000 out of pocket to get his diagnoses and from there access to resources that could help him. Going through school as an undiagnosed autistic is a pervasive problem, made words for thsoe youth in foster care, or ignored due to a lack of equity in the school system itself.
Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont I agree on all the above Important. Tools. And. Technology. For. My. State. Of. Vermont. Must. Include. All. Information. And. Tool's. Available. For. Adults and. Children with. Learning. Disabilities I. Agree. With All. Of. This. Information. Is. Correct.
Elke Drayton If my child would have been diagnosed with Autism spectrum at early age instead of the age 15 our outcome with his education and development would be a lot better instead he struggled to school his whole life. He would have been better prepared for the working world
margaret bennett diagnosis and screening
Asa Diagnosis and screening tools, early signs, and disparities in diagnosis
Helen English, Children's Home of Wyoming Conference I believe that early diagnosis is key. Things like not interacting with others, sensory issues, aversion to different textures, sudden out bursts to get the room to quiet down or frustration in not being able to communicate what they want or need, constant pacing, inability to just stop doing something, constant change, even hyper focusing are all signs of autism. As they person gets older there is also the lack of social skills, inability to understand feelings, not making eye contact. This is important because the earlier this is detected the faster the resources can be assigned to help. Also the family needs to be educated on what they can realistically expect from their child and given access to the resources to help them.
April I’m an autistic female who didn’t get my diagnosis until I was 21, and a lot of the signs me and my mother now recognise as early autism. Obviously autism is a spectrum and not every autistic child will fit into the same boundaries as I do, but if you’re noticing a pattern then it might be best to look into it. A comprehensive list of early signs I displayed as an autistic girl: - incessant crying, despite doctor visits confirming I was healthy. Could not be comforted or soothed for hours at a time even when my needs were met. - difficulties bottle and breast feeding. My younger brother, also autistic, had this issue too. - would not look up at my parents while being bottle fed. Would watch things around me. - wouldn’t smile when asked. - as a toddler, would cry when other children approached. - didn’t sleep through the night at all. Woke every few hours well into my teens. - had trouble potty training. Though I could recognise the feeling enough to ask for a nappy, refused to go in the toilet itself. - walked on tiptoes. - collected strange things for a small child, like decorative soaps and brushes. - had certain ‘tics’ like repeating words, blowing at the end of a sentence,
Anonymous Early detection of Autism Spectrum Disorder (ASD) can be immensely important for children and their families. With an early diagnosis, children can begin to access interventions and wraparound resources to help them develop and maintain skills needed for life-long success. ASD symptoms present themselves in unique manners across individuals, but children with autism often experience challenges in three main areas that can be telling of a possible ASD diagnosis. These three areas include: -Impairments in social skills (e.g. difficulty with initiating and maintaining social interaction). -Difficulties in communication (e.g. delayed acquisition of language, lack of understanding of nonverbal communication). -Behavioral differences and challenges (e.g. hyper focusing on specific items/topics, frustration when transitioning between tasks and situations, repetitive behaviors). Intervention and supports may include evaluation for special education services through the public school system, speech therapy, occupational therapy, social skills training and behavioral therapies that can help children with autism learn functional behaviors as well as gain skills in foundational problem-solving, emotional regulation, and coping with frustration. The goal for children with ASD, as with all children, is to help them become as independent as possible and to support their strengths while also addressing behaviors that could inhibit their future potential.
Sarah Early detection is important because language delays and disorders are common in autism, and language development begins in infancy. If we can begin providing enhanced and targeted language input and exposure (including Augmentative and Alternative Communication) at an earlier age, the prognosis for continued communication and language development improves.
Gene Bensinger, Parent and Guardian A continued emphasis on basic science research is essential to more quickly, accurately and efficiently identify and serve individuals based on their individual needs and circumstances, which cluster in subtypes.
Shyla Patera, North Central Independent LivingServices, Inc. Recognizing the signs of Austism is important just as it is for any disabilities. group.Parents and family members need both medical and social interventions.
Rappahannock Area Autism Council Early detection is important so that treatment can begin earlier. Earlier treatment, hopefully, will help to prevent or preempt disabling aspects of ASD.

Question Area Not a Priority: This Question topic should not be a priority in the update of the Strategic Plan.

Respondent Response
Catherine Martell, autistic, health care provider not a priority
Anonymous This has been covered by many sources and is addressed by pediatrician. Don’t waste money on this.
Anna As an autistic person I can't say that early detection should need a lot of research because I already know my kids will already be autistic. It's a neurotype I'm proud of that they deserve to inherit, and to try and prevent it or have anxiety about it is disrespectful to them because it deprives them of being loved and accepted as who they truly are. I am not afraid of my kids being autistic, I am terrified of the ableist world surrounding them. I feel like a lot of ""problems"" surrounding autism like delayed child development are deeper sociological and public health issues. We need neighborhoods that are more conducive to people coming together, because when humans lean into our social and tribal nature of interconnectedness is where we thrive the most. Interventions cost thousands of dollars, and while useful, given that demand seems to outpace supply, we should question how our society is structured. We are approaching a generation where many previously undiagnosed people are able to be aware of their neurotype before parenthood, and this allows us to be properly and adequately prepared.
Rebeka Edge, Behavior Matters I believe at this time, the diagnosis of Autism has greatly improved over the years. The next step having the diagnosis provider educating parents on therapies. Families are often given a slew of referrals but have no idea where to start.
Lisa This topic, while still important, seems less of an issue than the other questions. Disparities in diagnosis are part of disparities in health care as a whole in this country and will improve if health and mental health care needs are addressed.
Denise Wildrick, Autistic Adult and Parent I do not find this to be a legitimate concern. The fact that it is the first question is actually insulting. I have 4 children with autism and I am an autistic adult who was diagnosed as an adult. One of my children in currently non-verbal at 8 years old and my now 7 year old was non-verbal until he was 5. We recognized their differences and received what little services Oregon had to offer but were basically on our own until developmental pre-school. Early identification does not matter, is not important, and does not need to be an agenda priority. Plenty of it is already in place, more is in the works, it does not need more attention and resources. Let children be children and teach parents that a diagnosis does not matter, symptoms do. Resources for those said symptoms can be important but the actual diagnosis does not matter. My non-verbal 8 year olds twin was not diagnosed as autistic till 9 months ago, despite the fact that she has been since birth. I know what I am talking about.
Autistic Self Advocate and current PhD student in Disability Studies I don't think that this is as important as other issues because of the risk of mis-dignosis, and over use of therapy for young children. I feel like there should be energy spent into making early childhood education more accessible and equitable for everyone. Furthermore, even if an autistic child is diagnosed at a young age, they will still grow up to be an autistic teenager and an autistic adulthood. Therefor more resources should be spent into providing supports for autistic people throughout their life, not just when they are young.
Anonymous It is a disservice to place disproportionate attention on diagnosis and screening. The entire lifespan needs attention.
Anonymous Early detection will only be used for eugenics. Reliable, community endorsed information about autism, such as that from ASAN, should be accessible to all without value judgment.
Julie Grant I think this topic has been communicated to death.

Miscellaneous: Response addresses other topics not listed above.

Respondent Response
Lisa Wiederlight It is important to ensure you are funding policy-based research. Where will the research land once it is funded? How will it support or drive public policy? Who will use it and disseminate it?
Kathleen First don't call it ASD. Many autistic object to the term Disorder.
jean publiee lack of real safety tests.none of the vaccines have been properly tested for safety. many have never been tested when they are given simultaneously. no safety studies exist. big pharma profiteers are scamming the americna public with colusion of the fda and cdc. examine the worldhealth organization meetingwhen they give public relations announcement its all safe and admit int he meeting that the safety studies are seriously lacking.completely lacking.
Ronni Blumenthal, Phelan-McDermid Syndrome Foundation We would like to request funding for increased genetic testing with autism diagnoses. There are over 25 genetic conditions involving autism, each of which has unique medical concerns and co-morbidities which require monitoring and/or treatment.
Michele, Parent, school employee Rigid thinking, hyperfocus on one topic, extreme reactions
Michele Lopez, The Guidance center-Early Head Start Doctors and medical professionals diagnosis a child with Autism. Then Early On or the school districts, do more testing and evaluations to determine what the child's special education eligibility is for an ASD diagnosis. So much testing, it is a waste of time. Share the results!
Eileen Nicole Simon, Signs of ASD should be looked for in infants (1) exposed to prenatal substances including: Tylenol, Motrin, aspirin, anti-seizure medications, pesticides, herbicides, alcohol, marijuana & anything that might affect in utero development, even excess vitamins, also (2) birth injury due to use of forceps, clamping the umbilical cord before placental blood flow has ceased naturally, & (3) delays in motor development, failure to smile by 5 weeks of age, & any indication that language development is delayed.
Maryse Hile, Parent of adult child with ASD who receives services I support the idea of early detection with a caveat: Those parties (and there are often many) involved in the effort to diagnose a child should be aware of the effect that such a diagnosis at a very young age might have on the family, and especially on the maternal-child bond. Diagnosis frequently leads to the sudden introduction of lots of strangers into a family's midst at a time when the mother and father are attempting to establish a firm bond with a child who likely needs lots of extra time. If it is possible to offer services to a family that needs and wants them while delaying an official diagnosis, so as to avoid interfering with this early, vital process between parents and child, that should be considered.
Julie Francois Disparities in diagnosis is a gap I have seen in my son's journey with his diagnosis. It is not enough to have a medical diagnosis, one must also have a school diagnosis in order to receive services in school. I think this adds an additional hurdle to guardians, especially when the categories that lead to the diagnosis are different in both settings.
Anonymous My son was diagnosed with ASD at 19 months old. At this age, he had genetic testing and the ADOS done. The results for the genetic test were that he has a duplicate chromosome and that is why he has all the issues since birth. I believe children should have genetic testing at birth. It was not any vaccine or food because it is in his DNA that he got from his father. He was born with developmental delays, sensory processing disorder, sleep disturbances, acid reflux, constipation, was non-verbal until the age of three, and behavioral problems. Now at the age of nine he still is not at the level of his peers. He has had nonstop therapies since he was five months old. I do not foresee my son being completely independent as an adult.
Anthony J Thompson Hand flapping toe walking odd noises no eye contact
Anonymous Your plan says ""many CHILDREN miss the opportunity to receive treatment during this critical period"" (the first 3 years), but perhaps it's The relationships that is to receive treatment (""the CAREGIVER-CHILD RELATIONSHIP misses the opportunity...""). Priorities: Are conversational turns (Serve & Return) predictive and helpful? (for this, look at research from LENA). Are the early odd or repetitive behaviors seen HUMAN behaviors (ones all humans do), and if so are these due to infant mental health issues? For example, is it common for humans in general to avoid eye contact when overstimulated or ashamed?
David Shapiro To Me, ASD folks lack social skills & have behavers, that may annoy other people. I have mild autism & one can tell people with mild autism by their fear of being around big crowds in social settings. They all tend to shy away from crowded settings, or try to avoid them all together.
Gary Ames, Quantitative EEG will show hypo connectivity.
Anonymous It's important to learn to recognize the differences associated with ASD that arise from actual differences in the structure of the brain, rather than the ones that arise from distress and mistreatment (e.g. meltdowns — ASD makes people more sensitive to distress but meltdowns are still a sign of distress rather than an inherent symptom of ASD, and it's important to understand what ASD looks like when the person who has it is not distressed), and also to learn to recognize the signs of masking so that people with ASD who are adept at masking their symptoms won't slip under the radar and can still get the help they need.
Deepti Hyperness
Beth Mortl Lack of facial affect. Any type of facial expression, like happy, excited, connected to another person are all non existent most of the time in undiagnosed babies.
Julie L Shaughnessy , Parent Intensive early intervention
karen barrett, barrett consulting damaging emotions and associated behaviors
konjoo lee It can be done by damage to the part of the brain where electrical flow is interrupted and neuromodulatory pathways.
Sonja Miller, Parent Prior to pregnancy or during pregnancy, questions should be asked about family dynamics; such as ADHD, ADD, ASD, Developmental Disabilities. Genetic testing should be an option. If families think their child is not developing speech or eye contact or engaging in social interaction; as young as 3 months old or 1 year old, doctors should not dismiss this as parents aren’t engaging enough with their child. Some older pediatrician’s still think along the lines of “refrigerator mom”.
Adrienne Benjamin It seems that most research on Autism is focused on the highest functioning ( Level 1 in DSM 5) people with ASD. This leaves the most vulnerable out of the crucial data on Autism. The American Academy of Pediatrics published findings in December 2019 that 40% of youth with Autism also have Intellectual Disability. (Meaning their IQ is under 70). Yet, almost all research on Autism remains on those with the least intensive needs. (I am not suggesting that those with Level 1 and 2 autism don't have important concerns and needs. )

Multiple Themes Addressed

Respondent Response
Jennifer Degner, Early childhood special education teacher We need more PSA about red flags, especially those of girls. This is an invisible crisis. We need education and information shared across the continuum from birthing/ parenting class, minute clinics, wellness check ups screener use, parents don’t know how to answer questions, community outreach with infant toddler services, parents as teachers, head start, churches, community groups especially those underserved groups and most vulnerable, school districts. The research is there to support that there is a lack of trained evaluation teams for certain locations (Kansas), wait time for evaluations is 9-18 months ( unacceptable), cost is prohibitive to families. Wait time for autism waivers is months, state waivers waitlist in Kansas is 9 years for the families that know to get on list. The medical community need to send out skilled presenters to partner with schools. The multi million dollar question is how can we get the medical community and our educational system to integrate to support families and children across the lifespan in a more seamless continuous way. We need to bombard every aspect of our society with autism awareness campaign and infrastructure to identify and streamline identification of toddlers and preschoolers quickly. But the structures are not in place to have skilled staff and medical staff available to meet the need. Themes Addressed: Accessibility, Disparities, Training
Orla Putnam, University of North Carolina at Chapel Hill I have been speaking to autistic adults, specifically autistic women, and their parents about these questions. This question has value in that the autism community, particularly those who go underdiagnosed like women, want to be able to identify their autism more easily so that they can receive services and find community. However, the big fear with this question was that autism would be identified and detected for prevention purposes. I think a distinction between the two uses for early detection is needed here. Themes Addressed: Acceptance, Disparities
Kristen Herrett While I see the value in early screening, unless screening is updated to include common presentations in females, little will be achieved. Early screening should measure social interaction equally with behavior. Themes Addressed: Diagnostic Criteria, Disparities
Kaitlynn Lyra Smith, Unaffiliated Autistic Adult I believe diagnosis is important due to the psychiatric difficulties attributed to spending a childhood undiagnosed. However, I believe this should be oriented towards developing screening tools that better reflect the natural diversity of the autistic population. In terms of prioritization it should be recognized that diagnosis and screening is not an end to itself, but means of determining more appropriate treatment and assistance. Themes Addressed: Acceptance, Diagnostic Criteria
T. A. Meridian McDonald, Vanderbilt University Medical Center We need to STOP approaching early detection and signs of autism(s) from a eugenics perspective (cause, cure, prevention, and treatment of autism). We need to better understand the different pathways of autistic development. In order to understand autism better, we need to systematically investigate positive traits of autism. There are virtually no funding mechanisms, or NIH institutes, that prioritize non-eugenics research relating to autistic development. We need to understand the function of behavior in autistic children with regard to supporting autistic strengths (sustained attention, semantic memory, object orientation, systemizing, nonconformity, and sensory/perceptual differences) that underlie autistic excellence in sciences, arts, innovation, and leadership. Currently, our research focus for young children is primarily focused on conversion therapy instead of child development that focuses on scaffolding intrinsically-motivated preferences, interests, and behaviors. We do not know the critical and sensitive periods for different pathways of autism(s) for learning language, communication, sciences, arts, innovation, and leadership. Additionally, we know that co-occurring conditions occur at a higher rate in autism. We need to be systematically screening for co-occurring conditions beginning at early detection and screening. Themes Addressed: Acceptance, Co-occurring Conditions, Diagnostic Criteria
Anonymous Signs of ASD diagnosis must be identified in children and adults in a positive, affirming way, rather than how they are negatively received by others, e.i. lack of eye contact meaning they are deceitful when actually the Autistic person may be overwhelmed with deciphering facial expressions. Screening tools must also be positive and affirming, such as stimming is a way to self-regulate emotions as the Autistic person and they should be allowed to do so. BOTH of the above must address the disparities between race and gender. Currently, the DSM bases it's manifestation of Autism of White Males. Women, other genders and people of color are less detected and gain less support due to this discriminatory criteria. And due to gender, women may be misdiagnosed with anxiety and depression, while the core of the issue is not knowing they are autistic and are experiencing masking and autistic burnout and such, they are exhibiting anxiety and depression. Biomarkers or research thereof must cease. This research may allow future parents to abort their child if they have a chance of being autistic. This research will allow discrimination in healthcare or the workplace based on genetics. Biodiversity is crucial to the survival of our human species. There is very little support for adults who discover they may be autistic. Diagnoses for Adults are not covered by insurance and may miss out on an official diagnosis. Themes Addressed: Acceptance, Disparities
Anonymous Identifying autism in women and girls by professionals. Refinement of criteria for autism diagnosis in females. Relationship/similarities between autism and ADHD. Few services besides ""how to change behavior"". No efucation of parents for signs for boys *and girls* Themes Addressed: Co-occurring Conditions, Disparities
Sally Smith There is a large group of people who were not identified young and for them access to diagnosis is not equitable. The diagnosis is not covered by Medicare and costs over $1000 making it inaccessible to some often to those who need it most. Being unable to get diagnosis then locks those people out from the support they need. There needs to be better training around different presentations of autism. The gender bias needs to be addressed. Themes Addressed: Accessibility, Disparities, Training
Anonymous Recognizing masked autism, to address gender disparities in accessing diagnosis. Reducing the stigma around diagnosing autism. Themes Addressed: Disparities, Education and Stigma
Anonymous The most important thing for research is for researchers to start prioritizing autistic voices and decentering their identities. The diagnosis needs to also be rewritten from an autistic lens because it has a lot of faulty biases still. We also need to stop gendering autism, as if autism is “only” in men, and provide the diagnosis at a much more affordable rate. Themes Addressed: Accessibility, Diagnostic Criteria, Disparities
Anonymous - Diagnostic disparities tend to stem from racial and gendered stereotypes developed by Leo Kanner's pt population, leading to underdiagnosis in AFAB people and misdiagnosis of people of color. - The ""signs of ASD"" as currently described in the DSM prioritize neurotypical behavioral standards over things that actually affect quality of life. Diagnostic criteria should be reworked to emphasize things that actually need intervention, such as sensory sensitivities, rather than things that make neurotypicals uncomfortable, such as lack of eye contact. - Subgroups should be deprioritized and potentially eliminated. Many diagnostic professionals don't understand why the support needs framework was adopted and how it should inform diagnosis differently from the functioning labels framework. The fact is that autism is complicated, affects a wide variety of behaviors, thought processes, and emotional reactions, and changes throughout an individual's life. Subgroups limit access to services for some and encourage dehumanization of others. Themes Addressed: Diagnostic Criteria, Disparities
Anonymous The bias against diagnosing AFAB people with ASD (and other neurodivergencies) needs to stop immediately. It is not just a ""male"" thing. I've been refused diagnosis on my gender alone, in spite of numerous symptoms. Also, diagnosis needs to be affordable. I'm not sure about child diagnoses, but for adults it's usually thousands of dollars for an assessment. Which is especially problematic for autistic people who can't work due to their symptoms. Themes Addressed: Accessibility, Disparities
Anonymous The diagnostic criteria, tools, and process need urgent reworking by autistic people for autistic people. Current diagnostic criteria, tools, and process use a lot of outdated and outright false information as their basis that have long been debunked (e.g. „Extreme Male Brain Theory“, „Mindblindness“ aka lack of empathy). Non-autistic outside observer views need to be replaced by autistic inside loved experience expertise. Diagnosis should not happen so autistic children can be placed into harmful ABA therapy, but so they can be accepted, accommodated, and supported properly…again, autistic-led (e.g. autistic mentors, peer support, and autistic professionals). Themes Addressed: Acceptance, Diagnostic Criteria
oldladywithautism, autistic elder over 5 million adults in the usa today are autistic and don't know it because diagnosis was not available as children. Autism is strongly tied (look at the current studies) to substance abuse, homelessness, joblessness, self harm/suicide, eating disorders, social problems of all sorts. Many people could be helped and social struggles in the USA reduced by making diagnosis of adults available and by adjusting the current DSM to reflect science's current information about autism. There is a crying need for diagnosis of adults and support for those struggling to survive without ever knowing of their autism. Diagnosis can be life changing, giving insight into self understanding and personal histories and allowing self accommodation and access to help in everyday struggles. With baby boomers all becoming 65 and older by 2030 there is a strong demand that will become stronger for services for the elderly. Diagnosis of autism even at a late age can help reduce the burden of care on society and help individuals to succeed and find new ways to do better in life. There is a need for better definition of the processes and signs of autism, and better understanding of autism itself so that diagnosis is made less subjective and more accurate. So much of diagnosis depends on outmoded understanding of autism and is misunderstood or mistinterpreted in general medicine as well as older professionals who have not kept up with scientific discoveries of autism function and its many varied presentation. Many diagnosing professionals rely on what they were taught in school (however many years ago) and have not updated their information about autism and all aspects of the neurology behind the behaviors used today to diagnose it. There is no standard test or blood sample, standard way to diagnose autism but it depends on the expertise and experience of the professional, and diagnosis especially among adults and especially the elderly, females and minorities is particularly difficult. Themes Addressed: Diagnostic Criteria, Disparities, Training
Laurie George Pediatricians do not seem to know as much about autism as they should, aside from very stereotypical signs. I have no doubt a pediatrician could identify a level 3 or maybe even level 2 male child, but they don't seem to be informed enough to recognize a possible level 1, or really ANY autistic traits in female children. The screening tools at the pediatricians office although important, are very elementary. There are HUGE disparities in diagnosing females, as well as children of color. Black children are more likely to be diagnoses with ODD or other behavior based diagnosis. Additionally, finding a doctor capable of diagnosing autism is hard, even in large cities. The wait time for appointments can be long, especially if the office offers financial assistance...our local children's hospital has a wait list longer than a year! Imagine all of the early intervention lost during that time. Themes Addressed: Accessibility, Disparities, Training
Anonymous Closing the gap in diagnosis through race, ethnicity and gender would be a great start. Moreover, having government sponsored testing rather than through the private insurance sector would be a great start. The families of these children already have financial disparities in raising a child with ASD, much less required to pay out of pocket for diagnosis services. Themes Addressed: Accessibility, Disparities
Savannah W., Late in life, diagnosed autistic, woman, wife and mother. The traits of autism are distinguishable by a thorough analysis of one’s entire life’s experiences (both objective and subjective), on a case by case basis. Current models are wildly biased toward one version of autistic representation, and leave out a large majority of autistic individuals that don’t meet this narrowly focused and studied bias. This especially includes those who “mask” or “camouflage” and have flown under the radar to an extent. Early detection is vital for the autistic individual to lead a successful and healthy life. Not having a formal diagnosis doesn’t dismiss the presence of the diagnosis itself, it just prolongs the notion of being an out of place individual that has seemingly endless hardships in society and with relationships especially, but further, puts them at an increasing risk for more mental health related challenges as well. The balance however is to have accommodations at an early age that do assist them, without ostracizing the child from their peers any further. The goal is to encourage the best life for that specific child, without limiting them based on a one-size-fits-all model of support. More research into ALL presentations of autism is beyond necessary to provide us with the tools and support we actually need. We have to understand autism from the point of view of an autistic person, not the professional claiming to “specialize” in it based on a primarily deficit based model. Themes Addressed: Acceptance, Diagnostic Criteria
Amy Morosini Educate pediatricians better regarding biomarkers. Make it mandatory that pediatricians have to arrange for testing if a parent raises a concern. They should never dismiss a parents concern. Offer more early intervention programs and make them free so everyone can attend no matter their financial situation. Themes Addressed: Accessibility, Training
Lisbeth Little There are inequities to accessible health care that can provide early evaluation of ASD, especially when parent/child are non native English speakers. Parent outreach to underrepresented segments should be culturally sensitive in the native language- in particular health care navigators or staff that can help a parent navigate the systems of health care. Caregivers need to understand that ASD is a spectrum of needs and biomarkers that vary based from child to child, especially girls who often mask. Themes Addressed: Disparities, Training
Wayne, Parent There must be more research into why autism has grown so much over the past two decades. In addition the DSM-5 should be revised to remove Asperger's from the Autism Spectrum Disorder. This is controversial, but crucial for the rest of the kids who are considered non-verbal. Actually my idea would to have two ASD groups (verbal and non-verbal). Finally we need specific autism programs in every school that incorporates teachers who are trained specifically for autism and especially non-verbal autistics. Finally, physicians need to start looking at trying to diagnose as early as 18 months by taking early signs more seriously. Themes Addressed: Subgroups, Training
Gina Stango Increase funding for early diagnosis and intervention: Professionals need to be more forthright with parents of children who have developmental delays and symptoms of ASD! We need early diagnosis and to maximize early intervention resources in order to work toward the best possible outcomes for our children. The current system is failing children with autism and their families. The diagnosis process is very confusing and challenging to navigate, including with long wait lists for evaluation, wasting critical brain development time. My daughter was diagnosed with ASD at age 2 and is now 7 and it has always been clear that she also has ADHD, but no one makes suggestions for further evaluation because there is a culture of trying to withhold additional services. Themes Addressed: Accessibility, Co-occurring Conditions
Sherrie Kinard, Parent of 2 Spectrum Children Identification of subgroups and disparities in diagnosis. Themes Addressed: Disparities, Subgroups
Nichole Arp Disparities that need to be addressed are: Young parents are often moving residences more often than older parents. Thus they are not seeing the same pediatrician for long amounts of time. All pediatricians need to screen for ASD at well child visits and be trained on early diagnosis of ASD. Pediatricians need to diagnose ASD and not just refer parents to a eval somewhere else. That will enable parents to get services sooner. Also, the governments needs to provide universal preschool and put money towards attracting teachers to teach and be trained in early signs of ASD and referral. That way, more children can be identified early. Themes Addressed: Accessibility, Early Screening, Training
Nancy Kearney, Parent adult autistic man in Massachusetts Continual development of early diagnosis of autism. Research on reasons for autism ie genetic, environmental, and other. Identification of subgroups to autistic,. Such as Catatonia-which my son has been diagnosed with Themes Addressed: Early Screening, Subgroups
Anonymous I think one of the most substantial things is the disparities in diagnosis, whether sex/gender or race/ethnicity. I also think that we need to move away from early intensive behavioral interventions, as they have evidence for leading to trauma in autistic individuals. So I think when we phrase things for why early detection is important, I think it's critical that we avoid any language that implies we need to detect early so that we can make autism extinct. Themes Addressed: Acceptance, Disparities
Ryan Get rid of ""disorder"". Autism is not a disorder. Call it ""difference"". Call it ""diagnosis"". Topics MUST include parents understanding that neurologically different brains are natural and normal. Neurodiversity MUST be a topic parents should learn about. Recognizing the signs of autism means parents must be educated about autism, which most of the time they are not. And not provided it even well and long after autism diagnosis. There are huge disparities in diagnosis and lack of access to diagnosing clinicians Get rid of the ADOS as the gold standard measurement tool. Fund someone to find another one. The ADOS is normed based on white male boys, and no other groups. It is not natural; the made up exercises do not accurately reflect the child in most cases. People have hollywood and horrible deficit based models/views of autism. Push for diagnosis in the child's natural and normal environments doing things the child naturally/normally does along with throwing in some new exercises. New gold standard tools need to be identified. Themes Addressed: Acceptance, Diagnostic Criteria, Disparities, Education and Stigma
Tosha The wellbeing of autistic girls should be more prioritized in all fields. As they mask more efficiently than boys and display different signs. But everyone should be truly equal here in that they receive the varying amount of services they deserve to develop and thrive, independent of any for-profit institution. Autism is not just a lack of social communication skills, but a singularly unique perspective of the world, and that should be factored into the research around diagnosis. The importance of early detection can be mixed depending on the autistic person and how well they get along in the world with a disability. Sometimes it is simply not necessary. Other times it is crucial to the development and wellbeing of the child to receive services to help them cope with the outside world. Not to alter their behavior, but to educate them properly on how to be safe and protect themselves from danger. While also assisting them in advancing the state of their disability to what's productive to them personally. Signs of asd should be treated more along the lines of pleasant personality traits. Themes Addressed: Acceptance, Disparities
Christina Gleason Early detection should focus more on how to best support the autistic children with all of their unique traits and challenges, not to try to make them act more allistic for the comfort of allistics. Support for autistic children of all races, economic classes, and other underrepresented demographics should focus on the well-being of the autistic child, not anyone else. Biomarkers make me uncomfortable, especially at an early age, because eugenics takes many forms, and while biology is destiny in some ways, too many autistic adults were dismissed as ""nonverbal"" when they could have communicated other ways if people had only tried, and I fear that certain biomarkers would bring about similar problems, falsely presuming incompetence. Current diagnostic standards are based on observing autistic people's trauma responses, because being autistic today is practically synonymous with C-PTSD. The current diagnostic criteria may be useful for identifying autistic kids who cannot self-report ""symptoms,"" but there should be an alternate form of diagnostic criteria for people who CAN self-report the traits we often share, including symptoms of common co-occurring conditions that could point to autism as a diagnosis. Themes Addressed: Acceptance, Co-occurring Conditions, Diagnostic Criteria
Anonymous Greater knowledge about identifying ASD in BBIPOC, non-male, and adults. Greater understanding of not just deficits but positive traits and how each of the criteria can show up in ways that are not necessarily harmful to the individual. Themes Addressed: Diagnostic Criteria, Disparities
Elizabeth Axford Diagnosis and screening should be made more accessible to poor communities and communities of color, which may find it more difficult to access resources that lead to a diagnosis. This means these groups are underrepresented in the clinical population, and it makes it more difficult for autistic people from these groups to receive help for their disabilities. We need to be able to direct autistic people, children and adults alike, to affordable and approachable diagnoses. This is especially true for communities of color and low-income communities, which tend to receive fewer diagnoses and are less represented in the population than white cis male autistics. We need to address these disparities both in clinical representation and in access to diagnosis, which is the first step to giving autistic people the tools to cope with a neurotypical world. Themes Addressed: Accessibility, Disparities
Andrea Grover Research needs to focus on diagnostic and screening tools that are informed by and tested with diverse intersectional populations. Studies need to involve self-diagnosed as well as clinically-diagnosed people, since access to diagnostic services is unequitable. Recent studies that do this are finding that self-diagnosed autistics are much more similar to clinically-diagnosed autistics than to non-autistics. This is also a necessary route to conducting research with adequately diverse populations, because marginalized people are among the least likely to have equitable access to diagnosis and therefore are most likely to be self-diagnosed. Themes Addressed: Diagnostic Criteria, Disparities
mother, guardian, and advocate It is critical to identify the sub-groups of autism. We must understand why some develop seizures before adolescence, seizures during adolescence, some never develop seizures. We MUST understand why there are 13 different diets that have proven, clinical effect in different individuals, i.e. one kid doesn't responds to GFCF diet but begins speaking after the Body Ecology is implemented. We must prioritize sub-types or all autism research will be inconclusive. Themes Addressed: Co-occurring Conditions, Subgroups
Anonymous The diagnostic criteria are based on a deficit model, which is harmful for autistic individuals. It only focuses on the things they cannot do, instead of looking at their strengths and weaknesses alike. The criteria for diagnosis are inadequate and restrictive, based on old assumptions and observations of white male autistic children. They do not take into consideration the many different ways autism can manifest in women, in adults, and in different cultures. Themes Addressed: Diagnostic Criteria, Disparities
Ren Koloni Early detection is not important as a matter of ""prevention"" but as a matter of getting information, services, and community support as soon as possible. Research and autistic people agree that early awareness of being autistic is incredibly helpful for understanding ourselves and our disablility. Addressing disparities in diagnosis - especially gender-, race- and class-based - is critical for ensuring that all autistic people are accessing the services and community support they need. As a disability scholar, I, and many other disability and autism scholars and advocates, believe that further research into biomarkers (or other relatives of ""cure,"" including neonatal diagnoses) is actually dangerous to autistic people. Furthering research in this area not only fuels ableism and public fear of autism, but confirms to autistic people that eugenics are the priority, rather than the lives we live and the support we need. In other words, recognizing autism is important so autistic people can understand themselves and receive support and care - not so allistic people can figure out how to avoid autism, and not so autism can be eliminated. Themes Addressed: Acceptance, Disparities
Anonymous It is important to develop diagnostic tools that function to identify autistic adults. Current tools are targeted at children, but ignore that entire generations of autistic adults were not able to be identified or supported as children. It is also important to develop tools that do not rely on outdated stereotypes of autism, but actually cove the full range of autistic life experiences and traits. Resources for diagnosis need to be equally functional and accessible across all age, race, gender, sexuality, disability, and socioeconomic ranges. Tools need to be developed to train practitioners to avoid out-of-date autism stereotypes and make diagnosis based on a modern understanding of autism. Themes Addressed: Diagnostic Criteria, Disparities, Training
Anonymous I think that there should be some separate diagnostic and screening tools for girls and women since they are more difficult to diagnose. I also think that there should be more studies on autistic parents since there's stigma around autistic parents and some autistics don't get an official diagnosis when they realize they're autistic because they hear about autistic parents experiencing that stigma with child welfare services. Diagnosis and screening tools should also be more affordable since not everyone can afford it, and can't get the help they need because of it. There also needs to be more discussion on how every autistic person is different, and autism is a spectrum disorder. Intersectionality needs to be discussed a lot more too. I'm also worried about prenatal tests for autism because of the amount of people who might want an abortion when there's nothing wrong with their child. I wish more neuropsychological testing could be done with fMRIs if a person opts for that instead of the tests that are currently done. Let the person choose between the two methods. It's probably easier to diagnose mental health conditions and intellectual/developmental disabilities if you can see the brain working. Please make the fMRI method affordable too. Themes Addressed: Acceptance, Accessibility, Disparities, Education and Stigma
Christina Diagnosis for young girls, the impact of media portrayal on early diagnosis, and parental acceptance/willingness to get their child diagnosed. I should not have been diagnosed at 31 when I was showing so many signs of ASD... just not the symptoms presented by straight white male characters on TV. Partnerships with local school teachers and nurses to identify early signs and testing. Research surrounding pre-natal genetic testing for autism and its potential use in a terrifying modern-day eugenics movement. Autistic children deserve to be born and their families deserve to know early the challenges they might face because of it. Themes Addressed: Acceptance, Disparities, Education and Stigma, Training
Anonymous Diagnostic criteria were developed primarily based on white, male children from English-speaking homes. Culturally competent identification of autism in marginalized racial, ethnic, and language communities is lacking. There is inadequate identification of Autistic girls, women, nonbinary, and transgender people. Many screening tools ask about specific Autistic stereotypes (e.g. special interest in trains, exceptional memory for dates, flapping hands) rather than Autistic traits as a whole (e.g. an area of intense interest/focus, exceptional attention to detail, repetitive movements). Autistic people who are skilled at masking/camouflaging their Autistic traits or whose traits are not expressed in ways that correspond to stereotypes end up misdiagnosed or without any diagnosis, yet struggle throughout their lives with unmet support needs. Autistic people with co-occurring conditions may also slip through the cracks because their traits are assumed to be caused by a different diagnosis. Themes Addressed: Diagnostic Criteria, Disparities
Anonymous Adult diagnosis tools services support after disgnosis..Gov.funds for screening and adult diagnose centers. Themes Addressed: Accessibility, Disparities
Sarah Longstaff Teaching parents about sensory issues and autistic culture is important. Suggesting that they keep an autistic child at home and avoid structured school as long as possible works out better for the child. Avoid ABA therapy at all costs. Encourage OT and Speech as long as they don't use ABA techniques. Reframe autistic characteristics as strengths, i.e., ""picky eater"" has a future in food research and marketing, taste tester, etc. Themes Addressed: Education and Stigma, Training
TP Working on access to evaluations for women and girls since it manifests and appears much different than ASD men/boys- and is much harder to detect, but even more critical given the suicide rate for ASD women is up around 80% and are more likely to be murdered or abused in partner violence/sexual abuse and poverty. Instead these women blame themselves their whole lives when no one told them or were able to read them from an earlier age..... and worse were prevented from accessing proper diagnosis/evaluation and even worse, were doubted ( when the accuracy rate for self diagnosis among women is very very very high- meaning they were right on the money even though everyone else doubted them....) Screening for young girls and women, easier access to diagnosis (due to differences in how ASD presents in women). Trauma and post diagnosis programs to help with social trauma and attracting predators. Additionally help for genetic issues like pyrolle disorder screenings starting in childhood Themes Addressed: Co-occurring Conditions, Disparities
Nicholas Elizabeth Faby Lack of access to free/low cost adult diagnosis; underdiagnosis of people of color and girl/women Themes Addressed: Accessibility, Disparities
Autistic Self Advocacy Network Funding for Question 1 included over $5 million in both 2017 and 2018 for research into the biological indicators of autism. We believe this funding would be better used in addressing the serious diagnostic disparities which persist across racial, ethnic, and gender lines. Funding related to reducing disparities only accounted for approximately 1.6% of total autism research in 2017 ($5.7 million) and 1.4% ($5.7 million) in 2018. With regards to racial disparities, additional funding for research is needed to determine whether recent positive trends towards equitable diagnosis for Black children continue, as well as to examine barriers to diagnosis for Latinx communities. Data from the 2016 ADDM report shows that children assigned male at birth continued to be diagnosed with autism at 4.2 times the rate of children assigned female at birth. We recommend that additional research be conducted to better understand how autism presents itself in women and girls, as well as gender diverse autistics. Finally, while closing diagnostic disparities in young children is critical, we note that adults continue to struggle to access diagnosis. A focus exclusively on early diagnosis excludes a large contingent of autistic people who were born before modern diagnostic criteria, and disproportionately harms people of color, women, and people from underserved communities. We urge the IACC to expand research on diagnostic tools and access to diagnosis for adults. Themes Addressed: Accessibility, Disparities
Anonymous early signs/biomarkers, disparities in dx, and funding for diagnosis Themes Addressed: Accessibility, Disparities
Levi Miller First of all, it depends on which disorder you are talking about. An important thing to note is that each disorder on the spectrum is completely different from one another as some show no signs at all at an early stage and are diagnosed later. Also, there are some people who might show tendencies but don't meet the strict definition to be diagnosed on the spectrum. What is important to understand is that each disorder is completely different from one another and some disorders such as forms of Asperger's have no signs at an early stage. What is bias about this question is one, I see it as grouping the disorders as one and two, is that I see it as treating ASD like it is bad which it is totally not. In regards to subgroups I think we need to drop the generic term ""autism"" and identify each spectrum disorder individually so we can eliminate bias and generalizations that come. There are many disparities when it comes to diagnosis. I myself am someone who has a communication disorder that is related to ASD as well as a few sensory quirks. However, I had a professional evaluation done almost ten years ago and it was determined that I do not meet the strict definitions of any of the disorders on the spectrum. Unfortunately, there are major flaws and loopholes in regards to how our school system evaluates. Our school districts have a weak evaluation criteria and I actually was put on the ASD program when I was on an IEP even though I was not medically diagnosed. I don't really like the term ""early detection"" because everyone is different and we need to learn to accept people for who they are and do our parts to make the world more inclusive for all and not ""fix"" them if that makes sense. Themes Addressed: Acceptance, Disparities, Subgroups, Training
Jessica Hardy, Independent I've noticed a lack of awareness in the general public of the functional diversity in the Autistic Community at all age levels, genders (especially females), and ethnicities (especially people of color). And what happens most, is that neurotypical people often compare the behavioral, intellectual, and social levels of one Autistic person to another with errant and often offensive results. Within the Autism Community, the diversity of being on the spectrum is recognized. Within the general public however, I often struggle to convey that ASD is Communication Disorder first and not someone's personality or limitation. I believe a more progressive, accurate and mainstream dialogue could improve those dynamics and make functioning with Autism more normalized. The objective being losing the veil of generalization, stigma and general mysticism that creeps in the daily lives of people living on the Autistic Spectrum. Themes Addressed: Disparities, Education and Stigma
Anonymous Subgroups and biomarkers should not be the priority of autism research and does not help the autistic community. Early detection is important for other people to understand the autistic person so they can accommodate their sensory sensitivities and use sensory supports like headphones, sunglasses, hats, seamless clothing, etc. I would like research priorities to include the biases that general practitioners have by refusing to refer adults who aren't cis white men to an autism assessment, or who say they ""can't be autistic because they made eye contact and held a conversation."" Themes Addressed: Acceptance, Disparities
Cynthia M. Parkhill As a person who was born before modern diagnostic criteria for Autism Spectrum Disorder, I am part of an “invisible generation” of people who are completely cut off from services. This, to me, is the most critical gap in research, services, and policy for Autism Spectrum Disorder. The wording of your question confers the importance of early detection of autism, but there are no efforts at retroactive screening for people who grew up before adoption of modern diagnostic criteria. Our experiences should be included as part of Autism across the lifespan, but our struggles are currently invisible. Diagnosis should be available free-of-charge to any adult who wishes it. I wish to amplify a concern expressed to you by the Autistic Self Advocacy Network, that “A focus exclusively on early diagnosis excludes a large contingent of autistic people who were born before modern diagnostic criteria .... We urge the IACC to expand research on diagnostic tools and access to diagnosis for adults.” Any adult who wishes it, should be diagnosed free-of-charge in order to reach the “invisible generation” of adults who were born before modern diagnostic criteria. People who were born before modern diagnostic criteria are cut off from services that could maximize quality of life. For example: I’ve struggled, when applying for jobs, with the “social” aspects of hiring. It seems to me that skills and qualifications matter less during the application process than your ability to “package” your skills and build rapport with an interviewer. I can think of at least one interview that was possibly derailed by my response to an interviewer’s “small talk,” in the form of the interviewer complaining about not enough parking at the job site. Two different people, meeting me for the same job, used this conversational opening -- and, in each case, I responded that I had walked to the interview, and I added that the job site was only two blocks from the transit mall. The position was for technical services in a library, work at which I excel and possess several years’ experience. How much more productive could the interview process have been if I could demonstrate my proficiency -- but without the benefit of formal diagnosis, I have no legal standing with which to request such accommodation. So I wish to express again, diagnosis with autism should be available free-of-charge to any adult who wishes it, in order to reach the “invisible generation.” Themes Addressed: Accessibility, Disparities
Anonymous Disparities in diagnosis, educating early childhood teachers and daycare/preschool personnel for markers Themes Addressed: Disparities, Training
Anonymous Gaps: gender bias in screening; identification of PDA; Themes Addressed: Co-occurring Conditions, Disparities
Somer, Autistic Girls and women should be priority as we still remain under-diagnosed due to misogyny, outdated information and ideas about autism, and because autism is a factor in child abuse and domestic violence. We need much more access to testing, diagnosis, and support for adults. Adults of any age deserve to be treated as if they too are worthy, not just children. Some of us have struggled for years before learning we may be autistic, only to be scoffed at and dismissed by professionals when we attempt to find out for sure. Diagnosis should be about knowledge, not just about undertaking treatment. Themes Addressed: Accessibility, Disparities
Lisa Jeanne Graf As a woman in my 50s I am having a hard time getting a diagnosis. I would like one to advocate for disability rights better, and not feel like a fake in disability spaces. If there was a list of questions related to internal experiences that would be better than the current over focus on external behaviors. Many people mask to survive in this world so they don’t present as autistic. Also a brain scan test would be something that might be useful too. Genetic testing I don’t trust at all as it could so easily go in a eugenics direction. I would welcome brainscan as another way to get a diagnosis if the differences are striking. But only for use on adults. Themes Addressed: Acceptance, Diagnostic Criteria, Disparities
Shelley Disparities in diagnosis. No research should be done on detecting it before birth, that's unethical. Themes Addressed: Acceptance, Disparities
Damaris Ramos, Ron Davis Autism Foundation, Inc. I am concerned with the disparities in diagnosis in our minority communities, the lack of information provided in different languages might have something to do with this and the stigma created by calling autism a disorder will turn parents off from seeking a ""diagnosis"". Themes Addressed: Disparities, Education and Stigma
Lisa Morgan, Lisa Morgan Consulting LLC Include the unique characteristics of females on the autism spectrum when recognizing signs. Early detection is important so the people can get help and so people can encourage them to be who they are, even if the think differently and experience the world differently. Teachers and parents can help the children (both female and male) to make friends and be a part of their school society instead of being bullied, ostracized, and rejected. Themes Addressed: Disparities, Training
Anonymous Recognizing how culture, gender, race, and other factors can influence how autism presents, redesigning diagnostic tests and criteria to include diverse presentations of ASD - Ensure that diagnostic testing takes a holistic approach and includes interviews or other opportunities for narrative descriptions of how people on the spectrum experience autism in their lives Themes Addressed: Diagnostic Criteria, Disparities
Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ We highly recommend using the CDC (Centers for Disease Control and Prevention) resources Learn the Signs, Act Early ( Our organization, SPAN Parent Advocacy Network, is the home for the NJ Act Early Ambassador. Research indicates that early intervention results in best outcomes. However, there are delays in diagnosis and treatment, particularly for underserved families, resulting in health disparities. Specifically for screening, we support the use of screening tools recommended by the CDC and the research on recommended screening tools by the AAP Screening should be done in a culturally/linguistically competent manner. Funds should be allocated to organizations demonstrating success in reaching diverse parents of young children to assist in earlier identification. It is well known that children of color are diagnosed later with autism or misdiagnosed with other conditions due to explicit/implicit/cultural bias. Further, we know that children of color and low income children are more likely to be exposed to environmental exposure risks, and thus, once again, issues impacting children and families of color are not receiving the attention that they deserve and that the strategic plan supported. Early identification is improving overall, however, disparities must be appropriately addressed. Again, earlier intervention improves outcomes. Themes Addressed: Disparities, Early Screening, Training
Frankie Harvey-Shea Women and non-male persons are frequently misdiagnosed because those who do the diagnosing are not familiar with the very different presentations by non-male identified persons. Western medicine presumes males are the gold standard for all, which is absurd and sexist. There has been very little done to identify the physical repercussions of autism and to educate medical service providers concerning the need to identify autistic patients and to vary treatments accordingly. Themes Addressed: Disparities, Training
GS, Autistic Person As an autistic person, I strongly believe that reducing racial and gender disparities in screening and diagnosis, as well as improving access to diagnosis for adults on the spectrum, should be a priority. Because diagnosis is required to access supports and services, the general lack of knowledge and competence that clinicians display when assessing anyone who isn't a white male middle-class child creates and perpetuates systemic inequities. Furthermore, as an autistic person who believes that autistic lives have value, I am unsettled by the research community's zeal for identifying biomarkers and creating subgroups, which I fear will be used to prevent many of us from being born, as well as divide us into ""good"" and ""bad"" autistics based on a combination of our other social identities (race, gender, class, communications methods, co-occurring conditions, etc.) and our ability to contribute to capitalism. Themes Addressed: Acceptance, Disparities, Training
Alicia Munson, The Arc Minnesota We encourage the reframing of language around Autism diagnosis from “detection” to “identification”. Terms like “detection” reflect a medical model of disability, and imply disease/illness. The term “identification” is more broad and encompasses both acknowledgement of Autism and formal diagnosis. Early identification of Autism can help people access individualized services/supports. However, it is important to avoid funneling children - especially Black, Indigenous, and other children of Color (BIPOC) - into low-quality services that isolate and segregate them into adulthood. We encourage efforts that destigmatize the identification process by: Assessing how deficit based language contributes to harm and perpetuates negative stereotypes about Autism and Autistic people. Shifting toward positive messaging and avoiding negative and deficit-focused language. Examining the ways in which race, class, and gender inform current identification tools, and how those factors perpetuate disparities among Autistic BIPOC. Current standards are based on services/supports that have benefitted White Autistic males. Cultural differences, like avoiding eye contact and limited verbal communication, are not considered in these processes of identification. Understanding the current “evaluation” process also leads to underidentification of Autism in BIPOC and people assigned female at birth. Developing tools that focus on Autism as a neurological difference rather than behavioral disorder. Themes Addressed: Acceptance, Diagnostic Criteria, Disparities, Education and Stigma
George Eichhorn, ChildServe A primary barrier is early detection that arises from the lack of awareness of autism’s early signs and the need for additional assessments. More education is necessary. Another barrier is access to diagnostic testing. The scarcity of pediatric psychologists for diagnosis due to reimbursement rates is part of that barrier. These barriers are compounded by geography. It is also important to have equitable access to diagnostic services, treatments, and support services. In this regard, historically underserved communities need focused attention. Minority groups are sometimes diagnosed later due to these barriers. The barriers may result in alternative treatment, which may not be as effective. Diagnosis and eligibility determinations should occur before age 3. Due to lack of information, not every parent is aware of what is available, including potentially free services or that an official autism diagnosis or doctor’s recommendation may not be necessary. The nature of treatment can be a barrier. Children require regular and multiple appointments. The family coordination of these trips become barriers for families. Telehealth as a modality for some treatments can help. Addressing the family implications of treatment would assist in further treatment. The system needs increased screenings by primary care physicians and pediatricians. The system also needs to emphasize referrals for assessment and treatment. Themes Addressed: Accessibility, Disparities, Education and Stigma
Anonymous The most important priority is ensuring that women, and those of other marginalized genders and groups, can get an accurate diagnosis. Many professionals do not understand that ASD manifests differently in women, which leads many to go undiagnosed for far too long. As a woman who was diagnosed with autism at the age of 17 (which is incredibly early for a woman who succeeded in school), early detection is important so that children have an understanding of who they are instead of being mislabeled as anxious, shy, difficult, or many other labels that have negative effects on self esteem. The purpose of early detection should NOT be to force the child into ABA or other “treatments”, but instead to foster an environment of understanding and acceptance. It makes me sad to think of the years as a young person that I suffered with anxiety and depression, when it turns out that what I needed to treat my mental health issues was an accurate understanding of who I am (a autistic person, not a broken neurotypical person). Themes Addressed: Acceptance, Disparities
Dr. Andy Shih, Autism Speaks Early identification is crucial for earlier access to autism specific intervention and supports. Significant progress has been made in recent years to lower the age when ASD can be reliably identified, but the average age of ASD diagnosis in the US remains stubbornly around 48 months. While the racial gap in assessment has narrowed considerably between Black children and their White counterparts, much work remains, especially with the Hispanic community, where stigma, language and cultural barriers, and lack of regular access to healthcare continue to hamper early identification and diagnosis. Various community-engaged approaches have been shown to enhance ASD screening among racial and ethnic minorities. More investment is needed to help understand how to make the implementation and scaling-up of these programs more efficient, effective, and sustainable. The past two years has shown us the promise and value of technology in providing support and services for families when daily routines are disrupted. While research on telehealth, digital phenotyping and other technologies predate the pandemic, major investment is needed to consolidate and leverage lessons learned to accelerate the development and implementation of new solutions. If designed and implemented intentionally with an equity perspective, these technologies could also help address access, costs and quality, and services-related challenges to better wellbeing and outcomes for many unserved or underserved families. Themes Addressed: Disparities, Early Screening
National Council on Severe Autism, National Council on Severe Autism According to the CDC’s 2020 Community Report: • Most children (85%) identified with ASD had concerns about their development noted in their records by 3 years of age. • That said, fewer than half (42%) with ASD received a developmental evaluation by the age of three. • 30% of children who met the ADDM Network surveillance case criteria for ASD had not received a formal ASD diagnosis by 8 years of age, potentially limiting the services they receive. The fact that most children who were eventually diagnosed with autism did not receive an evaluation before their third birthday indicates a lack of urgency from referring physicians and/or a lack of access to qualified diagnosticians. Accordingly, the IACC should: • Directly address the lack of education specific to ASD provided to medical students, physicians, and other healthcare providers • Work with the US Preventive Services Task Force to recognize the overwhelming evidence in support of ASD screening and to provide clarity in their currently ambitious position on autism screening • Explore innovative ways to require timely screening and diagnosis for all children (examples include ECHO Autism and Cognoa) • Continually work to educate the medical and autism communities that all marketplace health plans and most other private insurance plans must cover preventive services for children without charging a copayment or coinsurance. This includes autism screening for children at 18 and 24 months. Themes Addressed: Accessibility, Early Screening, Training
Amber Allen Stress the importance of screening and recognition to ALL primary care providers. I have seen lots of preschoolers whose parents were told for more than 2 years to not worry about the symptoms that they brought up to the child's PCP. Themes Addressed: Early Screening, Training
Anonymous 1) Screening tools developed with significant, non-tokenistic participation from autistic researchers and people with lived experience of autism. 2) Tools that more accurately reflect the growing consensus that autism presents differently in girls, women, transgender people, racialized people, older adults, and basically anyone not a young white male. 3) Tools that take into account that externally observable behavours of autistic people are often misinterpreted by non-autistic caregivers and clinicians, and therefore are not reliable diagnostic criteria. 4) Tools that take autistic masking into account, and recognize that, for example, a masking autistic person may not have have had ""trouble in school"" but might still have high support needs. 5) Tools that allow answers from non-verbal autistic people to be taken into account, through the use of AAC, for example. 6) Tools that give more space to explore the sensory processing and motor planning aspects of autism, instead of limiting criteria to poorly defined ""social and communication deficits."" Themes Addressed: Diagnostic Criteria, Disparities
Jacqueline Ward Inclusive intervention is needed to bring an autistic or neuro-diverse individual successfully through life. The diagnosis should not be a deterrent nor a label. The diagnosis should recommend practices for the entire family, classroom, workplace, law enforcement, and community at large to support the individual. Disparities in diagnosis occur when their is a negative reaction to the diagnosis, and we need to change that. Funding and access to diagnosis are secondary because if a person believes that autism is not a negative thing, they will accept it and pursue help. Themes Addressed: Acceptance, Education and Stigma
Michael J. Borr, Chair, Advocates for Autism of Massachusetts AFAM endorses Obj. 1-3 of the 2016-17 Strategic Plan with respect to (i) demonstrating the benefits of early detection of ASD, (ii) documenting and reducing disparities in early detection and access to services, and (iii) improving/validating existing and new tools, methods, and models for diagnosing ASD to connect children to targeted interventions. Findings by CDC and others show significant progress in reducing racial/ethnic disparities in the identification of ASD; however, IACC should continue to track efforts by CDC and others to further reduce barriers to early diagnosis and intervention, and insurance coverage, in communities of color, ethnic and language diversity, and economic challenge. These efforts are even more critical given the Covid-19 pandemic, which has had a disparate impact on these same communities. Availability of providers in proximity to these communities is critical given challenges families with children with autism face in traveling for diagnosis and care. IACC should explore how telehealth services might enhance such accessibility (without exacerbating disparities). IACC should monitor whether access to early diagnosis and targeted interventions are available irrespective of whether a private payer or a public payer pays for these healthcare costs. If significant gaps are found in meaningful access to diagnosis and interventions/supports, IACC should provide a detailed report to CMS and/or the National Association of Insurance Commissioners. This research is undertaken in the context of broadened criteria for ASD in DSM-5 in 2013. As IACC pursues research objectives, it should also consider impacts of the DSM-5 changes, and weigh whether to recommend a further revision in the DSM criteria or otherwise address the issue of heterogeneity and phenotypes under current diagnostic definition. Some in the field argue there should be a distinct diagnostic category of individuals who exhibit severe social-communication impairments, cognitive deficits, sensory dysregulation, and maladaptive behaviors. See National Council on Severe Autism Board of Directors. (2021, October 8). NCSA Position Statement on Diagnostic Labels: The Need for Categorical Recognition of Severe Autism in the DSM. Retrieved November 19, 2021, from Even in the absence of refinements in how people with ASD are categorized for purpose of research, inclusion of those with severe autism in research should be a priority; they are so often not represented or underrepresented in research produced to date for well-documented reasons. Themes Addressed: Accessibility, Disparities, Subgroups
Autism Science Foundation The Autism Science Foundation is a leading source of information for families who want to learn about ASD. Its website contains information on: (1) the early signs of autism; (2) the diagnostics tests used to diagnose ASD; (3) and what families should expect following a diagnosis. The new IACC Strategic Plan should address the following current challenges in screening and diagnosis: • Recognizing ASD in Females. There is a continuing need for earlier recognition and diagnosis of female with ASD, considering differences from males in prevalence, comorbidities, and perceived stigma and bias, along with other barriers to early diagnosis. • Reaching Underserved Communities: There is an urgent need to improve screening and diagnosis of ASD in racially, ethnically, and socioeconomically underserved communities. Healthcare providers need to recognize and overcome implicit bias, parental distrust, as well as other logistical and practical barrier to assessment, diagnosis, and treatment. • Screening and Treating At-risk Infants. Healthcare providers should encourage screening and diagnosis, as early as at 6 months of age, especially for those with an increased familial likelihood of ASD (such as having a sibling with ASD). Preemptive intervention through a structured program can lead to reduced ASD symptom severity and reduced odds of an ASD diagnosis later in childhood. • Identifying biological markers for ASD. More research is needed to determine biological markers for ASD. For example, a promising study showed that brain scans of infants as young as six months can be used to accurately predict which high-risk infants will later be diagnosed with ASD (Hazlett et al., 2017). Findings such as these can help identify ASD even before symptoms develop when preemptive treatment can be most effective. Themes Addressed: Disparities, Early Screening, Training
Anonymous Most important priorities in research from the view of the parent and caregivers- how best help them at the earliest possible developmental phase when ASD in children is suspected/ recognized. Include teachers / caregivers in helping to create screening instruments normed for all racial ethnic & cultural & linguistic subgroupings omitted in research findings. Themes Addressed: Disparities, Training
Anonymous Early detection needs to be focused on equity of diagnosis regardless of race, ethnicity, and gender. The roles of at least two factors need to be analyzed to better understand why diagnosis--with or without early detection--is not distributed more evenly across these categories: Current diagnostic criteria, which is fundamentally biased. Initial documentation of ASD symptoms was based on limited research samples that lacked ethnoracial or gender diversity and were based on subjective observations. (For example, children selected for study as part of the Nazi eugenicist agenda, or male children of white, economically and educationally privileged families in the US.) The majority of research on ASD--used to shape the current diagnostic criteria--continues to accept the initial data and conclusions, and remains focused on how researchers interpret the behaviors of autistic people through this lens. The general public continues to lack accurate knowledge and understanding of autism. This must be addressed to bolster early detection; misinformation and stigma lead parents/caregivers to defer or even dismiss traits that may not rise to a level of ""concern"" in early years. Some parents/caregivers may believe that it's an overreaction to complete screening, especially when a child shows no outward indications that those autistic traits are impacting them emotionally or physically. Others may believe signs (particularly sensory integration difficulties) are a result of parenting behaviors. Recognizing that factors may impact when and why someone seeks diagnosis and support, access for diagnosis must also be accessible (financially, geographically, culturally, etc.) outside of the ""early detection"" model. Themes Addressed: Accessibility, Diagnostic Criteria, Disparities, Education and Stigma
American Academy of Pediatrics Pediatricians strive to continually learn how to better identify children with autism spectrum disorder (ASD) early in life and how to design the most effective interventions and treatments for these children. The AAP applauds the efforts of the IACC to update its Strategic Plan and appreciates the Committee’s willingness to take comments on the plan from interested stakeholders. The Academy’s Clinical Report, “Identification, Evaluation, and Management of Children with Autism Spectrum Disorder,” published in January 2020, is designed to help clinicians better identify and diagnose children with ASD as early as 18 months of age. Early diagnosis and interventions for children with ASD is particularly important as recent Centers for Disease Control and Prevention (CDC) estimates confirm that the prevalence of ASD in children is 1 in 54 – a 10 percent increase from the last estimate. Early intervention is crucial, as children with ASD and other developmental disabilities benefit the most when interventions are started at a young age. However, for screening to be effective, it must be applied to all children – not just those who exhibit developmental symptoms, those that an individual clinician believes would benefit, or those that have access to a medical home. While standardized screening for ASD at 18 and 24 months of age with ongoing developmental surveillance continues to be recommended in primary care and other settings, there is a need for more accurate and culturally sensitive screening approaches to help ensure that access to ASD care is equitable across racial/ethnic, socioeconomic, and geographic lines. The AAP was pleased to see that the need to reduce disparities in diagnosis and access to services was included in the 2021-2022 IACC Strategic Plan but would encourage the Committee to make it a more prominent priority in the updated strategic plan. We know that Black and Latinx children continue to receive developmental evaluations later than white children, and, thus, receive diagnoses later. CDC data also shows that American Indian and Alaska Native children and Latinx children are less likely to be identified than white, African American, or Asian children. This data demonstrates the need to reduce disparities in diagnosis and the urgency for this to become a top priority of the 2021-2022 Strategic Plan. In addition to reducing disparities in diagnosis and treatment, the Academy strongly supports improving the understanding of the causes of ASD, advancing early detection, enhancing evidence-based interventions, expanding family support services, improving the transition from pediatric to adult care settings, and meeting the needs of people with ASD across the lifespan, all of which are addressed in the Strategic Plan. The Academy agrees with the aspirational goal to provide the earliest possible diagnosis for people on the autism spectrum so they can be linked to appropriate interventions, services, and supports in as timely a manner as possible to maximize positive outcomes. It is well known that earlier detection leads to earlier treatment. Unfortunately, earlier detection is often limited by access to diagnostic services. This can be due to difficulty accessing subspecialists who can make a diagnosis or having to follow insurance requirements for specific kinds of multidisciplinary evaluations that can be difficult for families to navigate. As such, there is a need to develop a more thoughtful and comprehensive system to allow families access to bridge authorizations for services for at-risk children prior to formal ASD diagnosis. The Academy also encourages better support for families who are seeking a diagnosis but have not been able to arrange a diagnosis yet. The nation, particularly the medical community, needs to continue to evaluate and consider which types of providers should be screening children for ASD. While the medical home is the optimal choice, should childcare, the Special Supplemental Nutrition Program for Women, Infants and Children (WIC), Head Start, foster care and child welfare agencies have a role and responsibility? The Academy would like to note that earlier detection can be aided by tiered screening models that incorporate level 2 screeners for toddlers who are determined to be “at risk” (e.g., history of prematurity, family history of ASD, failed level 1 screening, etc.). The Academy urges the IACC to consider opportunities to strengthen the role of pediatricians in identifying and applying autism best practice diagnostic evaluations to children in their practices to reduce the access barriers that currently exist in specialty centers. Many children in rural and underserved locations cannot access tertiary medical centers or autism specialty centers due to a myriad of social determinants of health. Increasing training for and access to community-based autism diagnostic evaluations is a critical need to reach equitable access to autism diagnosis and subsequent services. In addition to early detection for improvement in skills and abilities for children, the Academy also encourages greater emphasis on supporting families of children with ASD and increasing funding for such support services. Families have increased rates of separation, mental health concerns, and issues with sibling wellbeing that are recognized but often not addressed or included in treatment plans. Earlier diagnosis of ASD and earlier intervention services can help families cope with some of the added stress that accompanies such a diagnosis. Finally, the Academy notes that many children who are diagnosed with ASD may often have a developmental trauma disorder. Therefore, it is important to encourage clinicians to ask about a child’s trauma history when they are screening that child for ASD. Themes Addressed: Accessibility, Disparities, Early Screening, Training
Paulina , Parent Información para las familias. Cómo puedo reconocer signos de autismo si no tengo la información o el conocimiento. Las herramientas de diagnóstico deben considerar la parte cultural de cada familia. La percepción acerca de discapacidad es diferente en cada cultura y los proveedores deben considerar esto también. Considerar las preocupaciones de los padres, que no siempre saben que es, pero saben que algo no anda bien. Translation: Information for families. How can I recognize signs of autism if I don't have the information or knowledge. Diagnostic tools must consider the cultural part of each family. Perceptions about disability are different in each culture and providers should consider this as well. Consider the concerns of parents, who do not always know what it is, but know that something is wrong. Themes Addressed: Education and Stigma, Training
Back to Top