Policies and Archives
Question Responses
Underserved Populations Responses
What are important issues for the IACC to consider with regard to the needs of underserved populations within the autism community, including racial and ethnic minorities, economically disadvantaged communities, and rural populations?
Topics from Responses to Supplemental Question 2
- Accessibility
- Cultural Competency
- Disparities
- Gender and Sexuality
- High Support Needs
- Inclusion
- Internet
- Outreach
- Rural Communities
- Training
- Miscellaneous
- Multiple Themes Addressed
Accessibility: Increase access to needed services and supports and make services more affordable.
| Respondent | Response |
|---|---|
| Chris Colter | They all have pediatricians for their kids. Get the information to the pediatricians. Get the insurance companies to cover therapies and treatments. Just do something that we can say the IACC stepped up and helped me with___. |
| Margie Bruff, University of Colorado at Boulder | free diagnosis and therapy options, educational opportunities, financial assistance |
| Sue Yacovissi, parent | transportation |
| Renee Mandell, mother | In terms of all the above, this must be government funded. I believe we are in a crisis situation and it should be done on a federal level. This allows everyone to be a part of of the solution. Money shouldn't be a barrier. |
| Anonymous | Healthcare access, fit of services for family needs |
| Raliat M. Bello | More activities and events for the ASD community. Available in all zip codes. |
| Parent | Expand opportunities and funding beyond the confines of rich neighborhoods. Provide and expert in all school systems. Don't discrimate. |
| Laurence Cobbaert , University of New South Wales (Australia) | Make diagnosis affordable. Beware of racial and gender biases within the autism research and diagnostic tools. |
| Sally Smith | Cost should not prevent people from getting a diagnosis. |
| Anonymous | Affordable ASD diagnoses. Affordable and easily accessible... everything, really, for these people. Minorities with autism are even more likely to need financial assistance because they already have a hard time getting jobs due to systemic racism. |
| Melissa Drake, Mother of two sons with autism | I truly believe ALL of our asd kids are under priveledged, when we are forced to live in poverty because there are no day cares to work, there are no programs here like other places that pay the caregiver/parent to take care of their child. UNDERSTAND NO ONE wants to go to work and be bitten and beaten with the strength of mike Tyson for crumbs. Invest in staff so turnover rates aren’t as bad as they are and give parents the option when they HAVE to give up their careers to care for their children because no one else will or can. It’s exhausting! |
| Vanessa parrott | Increased accessibility… Currently these demographics struggle to find resources and providers |
| Anonymous | Services not covered by insurance |
| Cyndi Stephenson | Poor people can't get help with autism related issues. It took me a long time to find an MH therapist for my son because state insurance wasn't accepted for new patients at the good clinics. We were sent to these dark dismal dirty clinics where we never see the same person, it's some training. We are test subjects, not patients! There are some amazing supportive therapies out there but they aren't at all accessible for poor people. Even at my son's OT we were expected to spend 200 dollars out of pocket for a special headset for listening therapy. That was half my rent for the month. But it helped him tremendously with auditory hypersensitivity. If I hadn't had 200 dollars we'd have missed out even on that. The clothes for autistic people often cost a lot more because they need to be made a certain way. I don't know about racial/ethnicity related issues. My son is Mexican-American and I don't think I've seen any problems related to that but I imagine it would be related to economically underserved areas. |
| Parent of Autistic Adult | Increase the use of community college resources nation-wide. |
| Anonymous | Hire more help to ensure each and every individual with ASD has fair and equal access to the therapies, medical care, education, etc. necessary to help them thrive and reach their full potential. |
| Anonymous | We need to understand that some of our safety net programs such as Supplemental Security Income are leaving people with Autism in extreme poverty and without the resources to maintain housing and other basic needs. |
| Kevin, Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) | I cannot respond effectively those those of the racial and ethnic minorities. However, those Autistic individuals in the economically disadvantaged communities and rural population are especially susceptible to being denied critical intervention services due to lack of funding. Both pillars which I have proposed require financial stimulus. Physical therapy, rehabilitation, and conditioning obviously requires health care insurance and additional funding outside of that such as for gym membership and outdoor athletic excursions. However, even placement into social assimilative communities requires financial backing, notably for room and board (housing) costs. If at a university (adults), the cost for tuition must also be considered. Miscellaneous close knit communities, such as in a prestigious suburban area, likely will incur a higher housing cost. In a rural community, it is cheaper however there are obviously few participants in the community, among even fewer willing to include an Autistic individual. However, this problem can be experienced in a wealthy community if the house is too isolated or otherwise there either is a deficiency of peers living locally or that Autistic person is unable to retain friends, not having the skills to do so. Where economically disadvantaged, the factor lies in the ability to attain physical therapy and likely in improper health maintenance (poor nutrition). |
| Amy Morosini | Make programs free |
| Nicole Shelton, AdvocacySD | Funding. It always comes back to funding. You weren’t putting money into the communities that needed or who need advocates to help them get their kid what they need in the educational system. |
| William Ash | Autism is an economic disadvantage. In many way my life has been very fulfilling. My biggest hurdle has been trying to support myself. Finding well paying jobs, finding a place in the educational system (I do have a masters degree, but it has been as hard to navigate the educational system as the workplace), finding meaningful work has all been a challenge. One of my largest anxieties is not being able to support myself now or in retirement (I am not sure I can retire). We can be very productive employees. We have a lot to contribute, but the social environment works against us--that is autism. |
| Adam Weinzimer | Medicaid MUST COVER ABA, and the reimbursement for ABA mist be fair to providers, otherwise we are forced to potentially not be capable of serving this population |
| Anonymous | The underserved communities do not have the resources or financial capability to provide for their loved one the many needed supports for their loved one to live at least a decent and healthy life. |
| A.K. | Medicaid and all private insurers needs to cover ABA therapy across all states if a child has ASD. It is a tragedy that poor decisions by state leadership impacts such a large number of lower SES children and families in such a significant life-long manner. |
| Jamie Doyle | The affordability and access to quality services and related supports that ensure Free and Appropriate Public Education (FAPE) are the most pressing issues that drive racial/ethnic and socioeconomic disparities within the autism population. Tacit knowledge of processes that rely on social capital and socioeconomic status create stark disparities. This includes access to and the affordability of ABA, educational advocates, speech therapists, neuropsychologists, developmental pediatricians, therapeutic camps, special education lawyers, and the bureaucratic, opaque process of applying for Medicaid and SSI. Navigating this complex system of services and supports varies by state and by school system. |
| Florencia Ardon | Access to diagnosis in the first place, then to services and therapies. |
| Jennifer Dapkins | Need aides but not the same ones, need to cycle through aides. Need to financial employee ie pay family caregivers |
| Heidi Parr, Case Manager, Seven Counties Services | Therapies, treatment, and support for someone with autism is VERY expensive, and is not financially feasible for many families. The amount of therapies/services covered, if a person can even receive them, is nowhere near the level to be of lifelong benefit to the person. |
| Anonymous | The government need to stop putting a price on the needs of people with disabilities especially financially since it cost extra for all these services. Some things are not covered by insurances even Medicaid. Fulltime care givers like myself should get some monetary help because most are not able to work due to this fulltime care. Some states pay the parent to go to school and care for their own child with disabilities and that's the way it should be. We should not have to decide if we eat, pay the rent, or buy the medications needed because there is not enough help and there's a long waiting list. Sorry, I may not be a stakeholder, but I am a parent who needs a lot of help to make sure my son will grow up as an independent adult. I want him to be successful in life and not have to depend on people that might abuse him. The most important thing for me is for him to have a good life especially once I'm gone. Thank you for your time and attention. |
| Carol Tatom, Autism Response Team | The most important issue for IACC to consider with regard to at-risk populations is not being able to access services due to Medicaid limitations. ABA services helps increase resiliency factors, but Medicaid does not cover ABA services. All risk factors could be addressed with ABA, but they are not able to access services. Educational supports in schools and rural populations are also needed for ASD students to achieve academic success. Having the schools partner with autism specific organizations/nonprofits also provides additional assistance to families and teachers in need of ASD support. |
| Tonja Nolan, independent | screening and testing without doubt. many autistics are never diagnosed because they change schools too often or do not attend regularly enough. If autism is even remotly suspect the school should make arrangments with the family and provide a full diagnostic workup as soon in the academic process as possible rather than wait until the secondary aspects (anxiety, depression, etc.) become strong enough that they create burdens to living for a populations with massive amounts of gifts to share with neurotypicals. |
| Anonymous | Increase funding to these areas for early childhood programs. |
| Anonymous | Transportation is HUGE. Also making sure they are aware of what services are offered. |
| Dani Sellmer | Access. These families need access to services others are able to get. They need to be able to find these services and they need to be affordable. I think many of the underserved have no idea what is out their for them. Also a lot of them cannot even get a diagnosis due to waiting periods and cost. |
| Amy Mason, Islands of Brilliance | The IACC needs to consider access to programs for these populations. How can these groups of autistic individuals whose resources are limited and their locations devoid of quality programs get access to the important quality of life programming needed for meaningful life engagement? |
| Sherrie Kinard, Parent of 2 Spectrum Children | Economically disadvantaged communities. |
| Nichole Arp | I said this before in response to another question but basically- Free Universal Preschool |
| Anonymous | Financial support for ABA! A lot of these communities cannot afford ABA therapy and therefore do not have access to it which is fundamentally prejudiced. The simple answer is financial support for these communities. |
| Frank Easton | Isn't like 99% of the US population economically disadvantaged at this point? That aside the rest of my answer is in my answer to the very first question. |
| McKenzie Hanson | Focus on inclusion into play based schools for low income communities and homes that are going through transition. Working with families to have compassion for circumstance. Summit School in Elgin, IL is a good example of a government funded school doing the work to help kids feel safe and explore their potential in the schools. Community engagement is what is ultimately going to help integrate the autistic community in helpful ways. |
| Alyssa Stone, Dynamic Lynks | Government and state funding needs to cover desired programs for these individuals. Autistic people should be in charge of their care and their goals, as much as possible. Stipends and fundings should give access to a multitude of services and therapy strategies to best support each person. |
| mother, guardian, and advocate | Quality Medicaid funded services. Attracting quality service providers for disadvantaged communities. |
| Helen English, Children's Home of Wyoming Conference | Funding and staffing. The more money there the more people can educate the community and create programs to help serve these wonderful people. |
| Aerienne Amadis-Noel Fey, Autistic (ASD 2) | Diagnosis needs to be accessible and affordable, there needs to be more weight given to black and indigenous autistics and autistic people from other marginalized groups. Services need to be available, supports need to be available and white people need to just listen and actually Do something. |
| Anonymous | How can members of all of these groups gain access to accurate diagnosis? |
| April Morome, Autistic person | Those who are autistic and are poor wait forever on the ID/DD waiver list if we are ""higher functioning."" But, I can use the help now, not 20 years from now. Help correct this, too, if possible, as well as help get everything I stated. done. |
| Sarah Zate, TTUHSC El Paso | Improved access to diagnostic services for the uninsured |
| Anonymous | Services should be delivered regardless of the ability for the parents to pay. As the old saying goes, you get the biggest bang for the buck when they're young. (Or the taxpayer can choose to pay more to house and care for the adults with autism.) Aggressive biomedical intervention needs to be as early as possible, ideally once a diagnosis is in place. |
| Anonymous | access to expert diagnosticians and funding for testing access to expert interventionists and funding for intervention transportation to the above. |
| Jennifer | Disadvantaged communities frequently aren’t able to send their children to services, or obtain an autism diagnosis. Public schools need to do their part in order to provide supports and recommendations to parents. Again, public schools play a vital role! We need public schools to do more in order to provide support and services. |
| Anonymous | Access to therapists needed. |
| Aster | For underserved populations, the problem of transportation is even more prevalent. Many autistic people struggle with driving, and for these groups it can be both harder to start driving and more impactful to be unable to do so. |
| Julie Grant | For economically disadvantaged families, there are few valuable resources. |
| Michelle Cheney | All autists are underserved. Every single one. Autism cannot be divested from an individual. No amount of masking makes an autist a neuro-typical. Autism is the waking reality of every autist. It is an organizing principle for autists and those who support them. Institutional racism further complicates accessibility for autists and families of color, the economically disadvantaged, and rural populations, but autism is autism and one's circumstances do not override the fact that an autist will have a meltdown when they are overwhelmed no matter what color their skin, socioeconomic status, or where they live. Until we end the ableist proclivity toward neuro-typical models and begin reinterpreting all systems and service sectors for autism accessibility, we will not be able to serve autists in any population. We need a vibrant, dynamic, pervasive, and immediate national effort to increase autism accessibility in all business, service, and delivery sectors and to embrace their unique talents and abilities that defy understanding yet improve our worlds exponentially. |
| National Council on Severe Autism, National Council on Severe Autism | Access to meaningful autism screening, supports and services can depend on the characteristics and geographical location of the person with the diagnosis. The IACC should work to improve access by: Funding research specific to telehealth for people across all functioning levels with ASD • Working with CMS to ensure that: —States are appropriately providing medically necessary care for children under the age of 21 as required by Medicaid’s EPSDT provision —States finally begin paying direct service providers as well as healthcare workers who are providing either state plan or waiver services at a rate that reflects the level of care they provide for people with severe autism —States are held accountable when they restrict access to individualized settings, including congregate care settings funded through HCBS and ICFs Working with OSEP to ensure that: —Underperforming school districts are held accountable when FAPE is not provided to minority children —Interpreter services are available for immigrant and non-English speaking people so they can navigate the special education system and participate in IEP meetings —IDEA is enforced at all ages, but particularly for autistic students who are transition age; families should be aware that the entitlement does not end at age 18 —Data are made available that correctly reflect the number of students served with severe forms of autism and what their outcomes are |
| Gina Stango | The system needs to try to provide the most holistic treatment programming for each child with ASD, instead of trying to withhold services due to funding limitations. Families should not have to pay advocates to seek appropriate education and treatment for their children with ASD. Paid advocacy is inaccessible to a lot of families of color, and many families don't feel empowered or even know how to advocate for their children. THIS SYSTEM WAS CREATED FOR OUR CHILDREN; WE SHOULD NOT HAVE TO FIGHT TO GET APPROPRIATE TREATMENT FOR THEM. We are exhausted. Please make our lives less stressful instead of more. |
Cultural Competency: Ensure that services are provided in a culturally competent manner.
| Respondent | Response |
|---|---|
| Lisbeth Little | As I mentioned, I'm in PA in Philly. Our parent resource center is in a low income minority neighborhood. We often help non native speakers, often the parents themselves have special needs or have difficulty understanding the education process. They're often not treated as equals in all systems of care whether it is educational, health, etc. Bias training is crucial. More grass root funded programs that focus on parent education and recreational programs for children and young adults with autism would be helpful. |
| Susan Corry, parent of a dev. disabled young adult | The system of governmental supports and benefits is soul-killing for the everyone -- even those with all time, language, and financial resources to spend navigating the system and fighting for the right supports. As a result, families who speak English as a second language and/or who are working multiple jobs don't have time to apply for these services. Nor are they aware of what services exist. No one is there to help them figure it out. It shouldn't be so hard to give your child a fighting chance in life. |
| Lucas Kunach, Fraser | Please add as a focus: -- Race, ethnicity, cultural, and language systemic barriers, including reducing barriers in under-served families getting connected to intervention, as well as increasing the diversity of staff delivering supports |
| Anonymous | Like an observation about ""Request for Public Comments - 2021-2022 IACC Strategic Plan ""referent the participation for the public, my concern is, be considered this issue to the linguistic diversity in the country is necessary to have more equity and give opportunity to the participation to persons who don't speak or write English. These issues are important, especially in the families with a family member with ASD disadvantaged communities with linguistic diversity. |
| Lindsay Shea, Drexel University | This needs to be a primary focus. These are communities whose voices are not typically reflected in public policy priorities. There is not equal access to timely diagnosis, treatment, and family support. Need to focus on building culturally competent supports and services and to creating the infrastructure (look at opportunities with technology) to bolster access to quality supports and services. Need to look at how to support families who are dealing with socioeconomic challenges, MH, and familial issues. |
Disparities: Conduct more research to better understand and combat racial and ethnic, gender, socioeconomic, and other disparities in service access and health outcomes.
| Respondent | Response |
|---|---|
| Lisa Wiederlight | Increased mortality for minorities as it relates to wandering behaviors, should be one. |
| Guohua Li, Columbia University | Understand and reduce racial and ethnic disparities in accessibility and utilization of social and healthcare services and outcomes (e.g., education attainment, employment, housing, health status, functioning, interaction with the justice system, premature death, life expectancy, etc). |
| Kristen Herrett | Find ways to equitably disperse funds. We are so hyper focused on stopping autism from happening in the first place we neglect those with it who are already here. |
| Anonymous | ASD doesn’t care about racial divides & perhaps in the weakest link can build the strongest link! |
| Anonymous | We need to examine and address the increased rates violence against Autistic people in underserved communities including electric shocking, physical restraint and deprivation of necessary regulating and communication tools in schools. |
| Anonymous | In several ways the system skews to help the rich and white and help the poor and minorities less. Racial differences can be perceived as disabilities, as can second language issues. A parent's concerns may not be heard and addressed with the same alacrity, or a child may be categorized as emotionally disturbed rather than autistic, for example. The school to prison pipeline flows right through special ed. Every parent with a child with a disability fears getting a call from law enforcement, but doubly so if they are also persons of color. And for those whose second language is english, a terminology- and acronym- heavy process like the IEP process can be bewildering. The adults with ASD are left to fend for themselves after high school, and unless one has the time and resources and persistence to do a lot of research, the adult may miss out on timely services he or she is eligible for. And i expect most services are available to a lesser extent in languages other than English. Adult housing is also frequently funded in part by parents of residents and those with funds are more likely to find a place in new development- type housing, which i personally find less preferable than community housing with supports as needed. |
| Marie Cullom | The access should be the same for ALL communities, period! No one should have to fight for access to care. |
| Anonymous | Affordable housing, respite options, community options, safety and security, access to quality educational, therapeutic and recreational opportunities. Consider quality of life, dignity and respect. Ableism deserves attention in conversations regarding diversity and inclusion. |
| Alexandra Hernandez | Racial and ethnic ASD minorities were disproportionatly impacted by virtual learning and many didn't get anything at all in terms of services. How will the government compensate for that? |
| Lisa | Healthcare equity as a whole for the under served populations is one of the countries most critical issues. Making meaningful changes in healthcare structure will benefit autism communities. |
| Michael Waterman | Many minorities, have even less access to services, then a poor white person. |
| Teresa Olafson | There needs to be research into the social determinates of health and Adverse Childhood Experiences to determine their impact into these subsections of ASD populations to begin to understand the impact for better guidance. |
| Anonymous | Research into the effects of autism on black autistics |
| Anonymous | Diagnose poc. The narrative that we're all whtie 5 year old boys is [redacted] |
| Anonymous | Whitehouse and BBC quietness and meditation TV ads about 1600 and Issac and not us in present day. |
| Cheryl | Help us. There is No help until a disabled child turns 18 or 22 and daycare does not exist for severely autistic children. Nothing is local. Doctors and therapists are usually an hour away. Good luck trying to find qualified doctor that takes Medicaid especially a dentist. Non verbal autistic children shouldn’t have to fight to get a communication device. One hour of therapy a week is useless. These kids are non verbal they don’t have a problem saying their R’s. They need to be in speech therapy everyday and provide transportation because nothing is local. Schools need more staff to protect autistic children and training. Most communities don’t have anything for autistic children that is free. Everything cost so much money. If you are a single parent either you are not working at all or part time because you can’t be a 24/7 caregiver and have a full time job. Offer some financial assistance that doesn’t count as income so you lose everything else. You can’t offer daycare financial assistance when daycare doesn’t exist for severely disabled child. |
| Aishah | There should be a way to have resources and providers made available to BIPOC people looking for an official autism diagnosis. For me I struggled to get a diagnosis as a black adult woman but I found a way but not everybody has the unique experience and resources that I had for my situation. At some point this community hast to realize that autism isn’t just for middle-class white people. We’re all human making us all vulnerable to having an undiagnosed condition such as autism. |
| Jessica Hardy, Independent | Social discrimination is so prominent against those who are living under the poverty line, people of color, females and those who can not live independently who happen to have Autism. People are being exploited on a daily basis because their family, guardians, or their employers know that they can easily get away with it. There needs to be a resource that is well known and available without having to go through hours of research or lengthy legal procedures that can interfere with this crucial gap in society. A catch-all or specialized operation/resource that prevents Autistic people from being exploited or discriminated against so frequently that it impacts their quality of life. Thank you for hearing me out and your time. |
| Anonymous | Effects of incarceration, violence, and police brutality on autistic people of color; suppression of LGBT autistic identities in institutional settings |
| Anonymous | Thus is so so important and im sorry i cant talk any more |
| Shelley | Investigation into diagnoses like OSDD and if they are given to autistic kids of color instead of being evaluated for ASD |
| Anonymous | Everything I have previously mentioned is 10 times worse for the underserved. |
| Breanna Kelly, Benchmark Human Services | I think there should be an assessment of racial and ethic minority representation in psychiatric, crisis, and forensic settings. I believe studies would show disproportionate representation. There is problem a significant amount of undiagnosed individuals represented in these settings. |
| Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ | This should not be a “supplemental” question. This must be infused throughout all the questions in the strategic plan as we did in our comments. Health disparities are well-documented for underserved populations from early intervention onward, resulting in worse outcomes for children. Equity for all children on the autism spectrum must be addressed. |
| Alicia Munson, The Arc Minnesota | High-quality, evidence-based, culturally respectful services and supports that maximize outcomes across the social determinants of health, as well as across the lifespan, should be developed. However, framing around services and supports should not be centered on “quality of life”. This assumes that people who are Autistic have a poor quality of life because of their disability, and that the formal service system - primarily designed by White people who don’t have disabilities - is the solution. This ignores the underlying systemic and social barriers, ableism, disparities, and oppression that actually contribute to “poor quality of life”. IACC needs to acknowledge the racial, economic, and gender biases of much of the research conducted to date, and the harm that has been done to many in the Autism community as a result of research biases. BIPOC and people assigned female at birth are underdiagnosed because the model of identification is based on white men. Autistic BIPOC are more likely to be pushed out of the schooling system. Some school districts have the lowest reportable graduation rate of 40%. This is unacceptable. We must: Conduct an ableism audit. Acknowledge the harm that has been done by continuing to stigmatize Autism, and take action to reverse that harm. Ensure that Autistic individuals are at the center of the IACC’s work. Not as an add-on, not a token gesture, but in leadership roles and setting the agenda. |
| Kim Musheno, Autism Society of America | The Autism Society appreciates the inclusion of Supplemental Question 2 as it shows a clear vision for the future of a fully inclusive and barrier-free autism community. Racial and ethnic minorities, economically disadvantaged communities and rural populations face immense barriers to obtaining the benefits of the dramatic improvements in our national understanding of autism and for obtaining the treatments and supports available to some segments, but not all segments, of our communities to optimize the lives of autistic persons. We have provided responses to Question 1-7 above that address this question in a large number of ways. An overarching concern is that the thrust of Supplemental Question 2 be not only imbedded more prominently within each of the Questions 1-7 but elevated to be co-equal with those questions. The Autism Society is committed to greater equity in access to autism services and treatment for all families of persons with autism and individuals with autism and we commend the IACC for addressing this critical issue and further urge the committee to place additional emphasis on these topics and to raise the priority of this set of critical issues to the top tier of concerns. |
| Adrienne Benjamin | Excellent question. Everything stated above: those who are disadvantaged because of prejudice, poverty, isolation in rural communities and those with Severe autism are historically and currently underserved. It would be my hope that the IACC would aim to seriously diversify your membership to include those listed above. Also, I assume many of you are aware that there are some groups in the autism community who are quite hostile to families advocating for their loved one with Severe autism. They call ABA torture, call Autism Speaks a ""Hate group"", they attack mothers like me of being martyrs, saying that Severe autism doesn't even exist. Please, Please, Please take this toxic and divisive slander on. Please acknowledge that these comments are hurting all of us. And, of course please include the reality of Level 3 autism. Thank you for this opportunity. About my perspective...My daughter is 25, usually delightful and happy watching Blues Clues or Telletubbies. She's also, totally non-verbal, not toilet trained, and like a 2 year old, has temper tantrums which are dangerous to her and others. This is my families autism. |
Gender and Sexuality: Recognize gender and sexuality as factors which may contribute to inequities and implement policies to combat disparities in service access and health outcomes.
| Respondent | Response |
|---|---|
| Orla Putnam, University of North Carolina at Chapel Hill | I think it's important to consider the huge overlap between autism and people who don't confirm to binary genders. This is a hugely stigmatized and underserved population, and both the transgender and autism communities need a good intersection of healthcare and access to services. |
| Catherine Martell, autistic, health care provider | another underserved population is those of non-binary gender or transgender |
| Anonymous | - Autistics are significantly more likely than the general population to be trans or nonbinary. Caregivers' control over autistic lives and the tendency of doctors to not see us as full people/take us seriously tend to drastically limit access to relevant health resources, including those needed for medical transition. - Black autistics are at increased risk for death at the hands of police due to the stringency of unwritten rules for avoiding brutality/murder. - Female or AFAB autistics have reduced diagnostic rates and access to services because of sexism built into the diagnostic criteria and ""known"" prevalence of autism. - Because of caregiver control of autistic narratives and infantilization of the disabled, autistics, especially queer autistics, are less likely to have access to comprehensive sexual education and information on informed consent than their peers. (This is worsened by ABA's emphasis on overriding autistic consent whenever possible, including punishment for saying ""No"" for any reason.) This puts us at greater risk for STIs, intimate partner violence, and abuse. |
| Eleanor Wildflower | AFAB (assigned female at birth) individuals are understudied and under-diagnosed. They are also disproportionately likely to learn early on to ""mask"" (hide) autistic behavior. All of these factors make it disproportionately difficult for AFAB people to find accommodations. When receiving care from medical personnel, transgender and nonbinary individuals often face transphobic abuse such as misgendering, mispronouning (using the wrong personal pronoun when referring to someone, such as ""she"" instead of ""they""), and even slurs and physical violence. Autistic people are disproportionately likely to identify as transgender or nonbinary and to be around medical personnel in the course of their daily lives, so this issue especially impacts autistic people. Medical personnel must be trained in how to work with transgender and nonbinary autistic people so that this group does not need to fear going to the doctor. |
| Christina | I'd really like to see it more widely known that many autistic people (particularly autistic women) are on the asexuality spectrum because I realized I was asexual first and if I had known there was overlap, I would have gotten diagnosed much more quickly. |
| 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 | females and autism need to be better understood so they don't get missed and end up with significant co-morbid mental health issues later on |
| Stacy L. Nonnemacher, Pennsylvania's Bureau of Supports for Autism & Special Populations | A focus on better understanding the needs of the LGBTQI community is warranted. |
| Skylar | The trans autistic community is super difficult to diagnose because of the way autism is gendered. It would be nice to stop gendering autism, and to just stop assuming anything about someone’s likelyness to be autistic based on gender/race/ect |
High Support Needs: Autistic people with high support needs should be recognized as an underserved group and receive more services and support.
| Respondent | Response |
|---|---|
| Anonymous | Adults with Severe autism severe autism severe autism severe autism severe autism severe autism severe autism severe autism severe autism severe autism!!! Help!!!!!! Severe autism routinely excluded from research |
| Tom Rickels, X-Excel (day services provider) | People in the severe range of autism are underserved and need more attention regardless of setting. |
| Elizabeth Bonker, Student, Rollins College | The nonspeaking community is underserved! |
| Kathleen Meyer | I will repeat. The more severe end of the spectrum is neglected. I don't see an understanding by the IACC of that end of the spectrum. In rural America we don't get the funding for housing development and have more limited ways of raising money than those in more urban settings. There are ways that the rural life is more conducive to a good life, quieter, more people know one another in the neighborhood and a tendency to look out for one another. More education about autism for MCOs and caregivers would go a long way. Defining a pathway for the more severe end of the spectrum for community versus vocational rehab facility would help. Abolishing the absolutism that everyone should be in the greater community would help. It adds to the stress of who will advocate for my son when I am gone? We have his lifetime of learning what triggers him and what works. We hope that he will continue to make gains and we are still working hard with him. If he doesn't, pulling him out of where he is a terrible option where he would have no structure, no opportunities to learn and grow, and be at extremely high risk of neglect and abuse. We have to live with this vision continuously. We had a case manager say, ""He can't stay in vocational rehab forever."" If that is the best fit, why not? He is a slippery escape artist, is triggered by coughing, sneezing, and cars starting. He will run across a 4 lane highway without looking. |
| Anonymous | Those with severe autism and ability to function do not qualify for services, supports and housing if there IQ is above 75. There is nothing to offer this population and parents are left to take care of these individuals without any help or hope for their future. |
Inclusion: Include voices from the autism community in implementing and designing service programs and include people from diverse genders, racial and ethnic minority groups, and other underserved communities in research.
| Respondent | Response |
|---|---|
| AutisticallyReal, Actually Autistic Advocate | OMG. @fidgetsandfries @Angry, Asian and Autistic, @Neurodivergent Rebel @Black Girl Lost Keys. [redacted] I'm not even an corporate entity with grant funding and who knows how much other support and if I know of these people??? And how their voices amplify the plight of those living with racism, ableism, and poverty? Please, I beg of you, do an iota of reaching out to the Actually Autistic community. You have the power to make the world a better place. Just. Do. It. #acutallyautistic #nothingaboutuswithoutus |
| Anonymous | Again: talk to us! Talk to black and brown autistic people. Talk to working class autistic people. The fact that you refer to us as ""the autism community"" when the first thing you'll learn about is that we prefer ""the autistic community"" sadly goes to show how little you engage with us on our terms. It start with simple gestures like calling us what we prefer, and talking to us like equals. Entertaining the idea that we should be ""prevented"" does not give me much hope, but I would love to be proven wrong here. |
| Anonymous | Consistent outreach to marginalized communities is an ongoing need, including awareness of cultural and linguistic competence. |
| Ronni Blumenthal, Phelan-McDermid Syndrome Foundation | Descosió s made must include representation from the communities in question. |
| Anonymous | There should be particular focus on funding grants that will recruit and involve diverse communities. Researchers should be provided direct feedback regarding their sample sizes and be informed of need to diversify and additional funding should be provided for translating materials and tools into additional languages. Existing grant funds rarely allow for the necessary resources which end with results of researchers use of English only. Language issues excludes many! |
| Anonymous | We just need to reach out to these communities with services, and that's likely going to be through school/work/medical and especially online, but some communities may lack internet, so it would be important to physically have a presence in these areas. Maybe educating these areas through PBS or other publicly funded and accessible medias. Of course, we would need these services translated or offer translations so they may seek help and especially with the context of their cultures as well. |
| Anonymous | Data set equality (is that a thing?). ...collecting data from the broader population. Clear, super clear, statements about the use of data. Short and long term. |
| Anonymous | The most underserved autistic people are non-speaking autistic people who still commonly do not get access to robust communication methods that work for them and are forced into ABA „therapy“, and abandoned in institutions and sheltered workshops. Make serving them a priority - this means listening to THEM, not their parents, teachers, etc. Work with self-advocates and self-advocate organizations like CommunicationFirst to achieve this. |
| Anonymous | Listen to autistic individuals whatever their circumstances. |
| Savannah W., Late in life, diagnosed autistic, woman, wife and mother. | I can’t speak for what I haven’t personally experienced. I’ve been extremely privileged for the majority of my life, and don’t intend to speak over the voices of those who especially need to be heard regarding these intersectional topics. It’s of the utmost importance to hold the opinions of these individuals in the highest esteem. Their experiences are unimaginably different from mine, in ways I can never comprehend, but they should be respected and consulted with to properly identify the unique challenges they’ve had to, and still have to, overcome. Thank you for these questions. Thank you for wanting to do better. Thank you for listening. |
| Trisha Gallagher, Public Special School Principal | We need to build trust with underrepresented populations so we can provide them with information and help them understand the impact of autism and the impact of interventions. |
| Julie Francois | More communication and help needs to go to these communities. They are underserved and struggle the hardest with finding any help/intervention due to population/financial/other constraints. Please look for creative ways to make services provided to all. |
| Meg P | Listen to us when we tell our stories, even if they are not pleasant. |
| Autistic Self Advocate and current PhD student in Disability Studies | In general, there should be more understanding about the lived experience among autistic females, LGBTQ individuals, and people of color. |
| Elizabeth Bartmess | Gather feedback directly from people with ASD within those populations. Ensure people from within those populations are invited into research and policy settings so that they can represent themselves. |
| Andrea Grover | Access to diagnostic and support services and inclusion of self-diagnosed people in research studies. Requirements to ensure broader representation in research studies. Compensation for participation in research. |
| Sarah Longstaff | Absolutely this needs to be done. Particularly in communities of color. POC are much more likely to be seen as ""badly behaved"" and shot by police. Poor people are shamed for things beyond their control and treated with no compassion. BRING PUBLIC HEALTH PEOPLE INTO THESE DISCUSSIONS. RAISE TAXES. You cannot focus solely on the individual without addressing Structural Violence. |
| Bek | Between 30 and 40 percent of autistic people are estimated to be unable to rely on speech to be heard and understood. There is next to no research on this portion of the autistic population. Substantial amounts of published research have presumed—without anatomical or other basis—that this population is intellectually disabled. To the contrary, substantial published research tells us that standardized measures of intelligence are not in fact evidence-based for this population and yet IQ tests are routinely given to this population. We believe that the vast majority of the nonspeaking one-third of autistics in this country—hundreds of thousands of people—have not been given access either through the education system or the adult services system to the tools they need to communicate agency, autonomy, self-determination, or to participate in appropriate educational and employment opportunities. As a result, we believe this is the largest underserved population of autistics in the United States. Autistic people of color, or those whose primary language is not English, who need but have been denied access to robust AAC face even greater inequities and marginalization. |
| Rachel Zanoni | Between 30 and 40 percent of autistic people are estimated to be unable to rely on speech to be heard and understood. There is next to no research on this portion of the autistic population. Substantial amounts of published research have presumed—without anatomical or other basis—that this population is intellectually disabled. To the contrary, substantial published research tells us that standardized measures of intelligence are not in fact evidence-based for this population and yet IQ tests are routinely given to this population. We believe that the vast majority of the nonspeaking one-third of autistics in this country—hundreds of thousands of people—have not been given access either through the education system or the adult services system to the tools they need to communicate agency, autonomy, self-determination, or to participate in appropriate educational and employment opportunities. As a result, we believe this is the largest underserved population of autistics in the United States. Autistic people of color, or those whose primary language is not English, who need but have been denied access to robust AAC face even greater inequities and marginalization. |
| Anonymous | Between 30 and 40 percent of autistic people are estimated to be unable to rely on speech to be heard and understood. There is next to no research on this portion of the autistic population. Substantial amounts of published research have presumed—without anatomical or other basis—that this population is intellectually disabled. To the contrary, substantial published research tells us that standardized measures of intelligence are not in fact evidence-based for this population and yet IQ tests are routinely given to this population. We believe that the vast majority of the nonspeaking one-third of autistics in this country—hundreds of thousands of people—have not been given access either through the education system or the adult services system to the tools they need to communicate agency, autonomy, self-determination, or to participate in appropriate educational and employment opportunities. As a result, we believe this is the largest underserved population of autistics in the United States. Autistic people of color, or those whose primary language is not English, who need but have been denied access to robust AAC face even greater inequities and marginalization. |
| Sandra McClennen | Between 30 and 40 percent of autistic people are estimated to be unable to rely on speech to be heard and understood. There is next to no research on this portion of the autistic population. Substantial amounts of published research have presumed—without anatomical or other basis—that this population is intellectually disabled. To the contrary, substantial published research tells us that standardized measures of intelligence are not in fact evidence-based for this population and yet IQ tests are routinely given to this population. We believe that the vast majority of the nonspeaking one-third of autistics in this country—hundreds of thousands of people—have not been given access either through the education system or the adult services system to the tools they need to communicate agency, autonomy, self-determination, or to participate in appropriate educational and employment opportunities. As a result, we believe this is the largest underserved population of autistics in the United States. Autistic people of color, or those whose primary language is not English, who need but have been denied access to robust AAC face even greater inequities and marginalization. |
| Nina | Between 30 and 40 percent of autistic people are estimated to be unable to rely on speech to be heard and understood. There is next to no research on this portion of the autistic population. Substantial amounts of published research have presumed—without anatomical or other basis—that this population is intellectually disabled. To the contrary, substantial published research tells us that standardized measures of intelligence are not in fact evidence-based for this population and yet IQ tests are routinely given to this population. We believe that the vast majority of the nonspeaking one-third of autistics in this country—hundreds of thousands of people—have not been given access either through the education system or the adult services system to the tools they need to communicate agency, autonomy, self-determination, or to participate in appropriate educational and employment opportunities. As a result, we believe this is the largest underserved population of autistics in the United States. Autistic people of color, or those whose primary language is not English, who need but have been denied access to robust AAC face even greater inequities and marginalization. |
| CommunicationFIRST | Between 30 and 40 percent of people diagnosed with autism are estimated to be unable to rely on speech to be heard and understood. There is next to no research on this portion of the autistic population. Substantial amounts of published research have presumed—without anatomical or other basis—that this population is intellectually disabled. To the contrary, substantial published research tells us that standardized measures of intelligence are not in fact evidence-based for this population and yet IQ tests are routinely given to this population. We believe that the vast majority of the nonspeaking one-third of autistics in this country—hundreds of thousands of people—have not been given access either through the education system or the adult services system to the tools they need to communicate agency, autonomy, self-determination, or to participate in appropriate educational and employment opportunities. As a result, we believe this is the largest underserved population of autistics in the United States. Autistic people of color, or those whose primary language is not English, who need but have been denied access to robust AAC face even greater inequities and marginalization. |
| Tiffany Glass | Our autistic son has experienced disproportionate barriers incurred by failures in supports for his use of AAC. We support CommunicationFirst's position on this issue: ""Between 30 and 40 percent of autistic people are estimated to be unable to rely on speech to be heard and understood. There is next to no research on this portion of the autistic population. Substantial amounts of published research have presumed—without anatomical or other basis—that this population is intellectually disabled. To the contrary, substantial published research tells us that standardized measures of intelligence are not in fact evidence-based for this population and yet IQ tests are routinely given to this population. We believe that the vast majority of the nonspeaking one-third of autistics in this country—hundreds of thousands of people—have not been given access either through the education system or the adult services system to the tools they need to communicate agency, autonomy, self-determination, or to participate in appropriate educational and employment opportunities. As a result, we believe this is the largest underserved population of autistics in the United States. Autistic people of color, or those whose primary language is not English, who need but have been denied access to robust AAC face even greater inequities and marginalization."" |
| Sarah | Listen to people from these communities and populations in the autistic community to hear what they need. |
| Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services | Supporting/funding community advocates is vital, as well as listening to community advocates into the needs of the community. |
| Anonymous | Listen to autistic people of color! Invite them into these conversations. Go out of your way to make sure they are in the room and that their voices are heard. |
| Anonymous | IACC to collect data ask parents and communities in greatest need as priory in policies. |
| Rappahannock Area Autism Council | Please see the response to Question #7. |
Internet: Internet access should be possible for all families, and increased online options for services, supports, and treatments may be helpful for people without easy access to in-person services.
| Respondent | Response |
|---|---|
| Anonymous | Working from home requires strong Internet access, which I imagine can be hard to come by in some underserved populations. I find headphones to be essential to my success in the workplace. Coffee, therapy, and sometimes medication have helped me. Any accommodation that I, as a white person with health insurance and some financial stability, have been able to access would tend to be less accessible to someone in an underserved population. |
| Anonymous | Expanding telehealth and stream lining to ensure effectiveness. Creating packaged behavioral programs that can be cost effective and parent centered to fade services but ensure generalized skill set. Research bias in early detection and how to mitigate risks. Resources for greater access-regular screenings within clinics, etc. |
| Peggy Wargelin, Parent with 18-year-old child with Asperger's diagnosis | Please continue remote activities and opportunities that were begun during COVID. It helps shy, socially stressed individuals participate and develop a level of comfort with people before getting brave enough to attend in person. Also, it is incredibly helpful for people in not only rural areas, but in states without services for this population. |
| Levi Miller | I already mentioned a lot of this in the previous questions but education and internet access is definitely a big one as well as many other ""kitchen table"" issues. I can't speak for these communities since I am not someone who has lived that experience but I will say that it is the same struggles that many other people in these communities face and many of those struggles have an even harder impact on those who are neurodiverse who have to live in these areas and deal with these struggles. |
Outreach: Increase public understanding and acceptance of autism to reduce stigma and increase outreach to encourage autistic people in underserved communities to seek out and receive the services they need.
| Respondent | Response |
|---|---|
| Jennifer Degner, Early childhood special education teacher | Get those campaigns in the churches, go door to door, etc |
| Yvonne Federowicz | Most autistic adults in these populations are undiagnosed, even more than in the best served populations (and there is little for adults even there.) Removing stigma-producing language from researchers' own work, changing to ""autism spectrum condition"" for instance, not using ""deficit"" for every difference when allistic shortcomings are not so defined, could be a start. People from marginalized populations might be choosing not to self-define in another marginalized population, that of autistic, given how badly the autism research community portrays autistics (in subtle but oft obvious ways.) People in such communities avoid health care practitioners, for instance, after even one or two experiences with subtly racist practitioners. The portrayal of autism by ""autism experts"" pushes all autistics in that direction, likely shortening lives! People in multiple categories that are marginalized by clinicians likely have this much worse... but who really, knows, you don't actually know where most of the autistics are, let alone doing good research on them, right? |
| Angela W. | Better communication all the way around |
| Michele Mann, ECD Connections | Community Outreach! Across most socioeconomic classes, most either visit a doctor and/or attend daycare. Outreach to these places is a great place to start. |
| Josh Compton | Public information campaigns must be clear, accurate, and plentiful. |
| Anonymous | Education re autism and disability across the board - schools - physicians - social services |
| Colleen Allen, Autism Alliance of Michigan | Expanded, funded outreach efforts– Programs and funding to reach underserved, marginalized communities – finding families in the communities they reside – early childcare institutions, schools, churches, stores, recreational venues with trained professionals who actually represent the communities we hope to impact. Using technology to reach these populations, with the recognition that even the most impoverished parents have cell phones. Working with employers, to develop stronger, more effective Employee Assistance Programs and support for child development for their employees. |
| Tosha | Black Autistic Lives Matter. And there needs to be serious systematic changes within these services if any of us are to be effectively accepted into wider society. Neurodiversity should be a prevalent idea even with minority groups, as skin color has no bearing on who is autistic and who is not. That is to say that white people are not the only ones who are autistic and have needs beyond that of a neurotypical. We should embrace all autistics with full love and acceptance, whether they be black, indigenous, asian or otherwise. Then they would be less effected by their disability, and would be able to thrive with the rest of us. |
| Christina Gleason | Distrust is going to be a big issue to overcome. Underserved populations have every reason to be suspicious of anyone claiming to want to help them. Pay other autistic people from various demographics to help develop messaging, suggest methods for reaching out, and actually working within their communities. Be open and transparent about your intentions. |
| Jodi Pliszka, Neurolicity | I believe that the ethnic minorities need to have even more education since they are the least diagnosed population. |
| Anonymous | Education on underserved populations within the autism community would be a good start. I'm trying to learn about that myself, but I'm not finding much. |
| Lisa Jeanne Graf | Connect these groups with autism lead organizations that focus on these populations and groups and individuals on Facebook and Twitter. Community is important. |
| Damaris Ramos, Ron Davis Autism Foundation, Inc. | The issue that needs to be addressed in underserved communities is destigmatizing autism and working on the acceptance of neurodiverse individuals. |
| Jacqueline Ward | Consider some cultures and ethnic groups view autism as a very bad, hidden problem. They do not want to identify with this diagnosis or even get a diagnosis because of the shame. If we change the language and just drop the word ""disorder"" it may open a more positive dialogue. Underserved communities also lack funding in schools which is usually where autistic characteristics are first seen. Support the family with positive information, show them the differences in perception, create an attainable future roadmap. |
Rural Communities: Autistic people in rural settings often cannot access needed services.
| Respondent | Response |
|---|---|
| Michelle Williams | There are very few community services, housing is scarce, transportation limited, and there is always a shortage of care providers in rural areas. The services that are listed on the Waivers should be available in every county in the state! |
| Erin, Parent | Rural populations do not have the same access to services as the general population. Funding and programs to educate doctors, teachers, therapists and other service providers about autism could help. |
| Michael | We live in a rural community, very remote in a small town. Our school is very small. Our son's IEP recommends a certain amount of hours per day and per week and we are woefully unable to get the services and care that he needs. He receives less than half of the recommended hours of service per week through the school, and we travel 230 miles one day per week and pay another group out of our own pocket to supplement his services. I believe that we could get this help if we lived in the city, regardless of race or economic disadvantages... the main issue is the fact that we are rural. In my opinion, more focus and funding should be put towards rural populations. |
| Maryse Hile, Parent of adult child with ASD who receives services | For rural populations, transportation is probably the most pressing need. It's vital for attendance in dayhab, volunteerism, vocational endeavors, recreation et al. Securing transportation is easier for areas that might have a regional entity such as ARC, for example. But even so, the transportation tends to be limited to to-and-from dayhab and vocational pursuits. If local stakeholders could work with community partners to help fund and establish fixed routes for weekend hours of transportation with those same providers (or others, if possible), clients who live with family could experience a close approximation of public ridership, with support, and only need dropping off and picking up at established stops, where they could meet up with their DSP or respite worker. This could have the added benefit of opening up the pool of DSPs and respite providers to those who might not have reliable-enough transportation for reaching far-flung areas of a rural county. It could improve staff employment numbers and retention. Moreover, the improvement to quality of clients' lives by adding independent integration into community activities during the weekend would be enormous and would benefit us all. |
| Janay | In rural communities they are at a disadvantage due to the population, which often causes ASD individuals without the needed services. I also believe that there is a huge economically disadvantage for many families dealing with individuals that have ASD. It seems that those with more money, are able to obtain better and more effective services for those on the spectrum. |
| Catherine Pinto, Parent | Access to experts even through telemedicine would be hugely beneficial to rural communities. Advice on behavioral and medication strategies need to come from qualified experts no matter where you live. |
| Edythe Koerber , Mother | We live in a rural very conservative community. I have always noted that ""kids with money "" have better access to services. There is not much racial or ethnic diversity here at all. |
| Dax, Autistic Self-Advocacy Network, Volunteer | Transportation times. Having to spend three or four hours in a bus one way is prohibitively exhausting for autistic people. By the time we get to our destination, we don't have any energy left over for doing anything. |
| Anonymous | Speaking from a rural area, it is access and availability of services. There are roadblocks from the start accessing care even at a distance because our system is set up to prioritize provider and insurer needs and they both work to prevent access. |
| Catherine Cornell | Rural populations have no or little support services, inadequately trained health personnel and care givers. Long wait lists for services greatly impact families and all those affected. |
| Mary McTarsney | We need more facilities in rural areas that offer testing. Almost ALL locations are in Indianapolis or near it. Not even family can make this trip for their child. |
| Jackie Allen | Rural populations are very underserved. Lack of therapists and providers make it impossible for families to access needed services. Programs need to be tailored to the individual and not be a one size fits all. |
| Sonja Miller, Parent | Rural areas are several under serviced due to lack of providers for caregiving options. Parents and families that are already having to give 24-7 care should be paid if there are not more services provided. Ongoing training for them needs to be more readily available and not have to be searched for. |
| Amber Allen | Rural - lack of access to: Thorough evaluations/diagnosis. Treatment when advanced psychopharmacology is needed Appropriate Speech Therapy - ST that only focuses on making the kids speak does not help with communication - they needs to offer ASL & AAC options! Therapy for oral aversion is also needed. Appropriate Occupational Therapy - for self-regulation, sensory therapy, etc. Behavioral Health - counseling therapy for autistics and also for parents (assistance with parenting, rule setting, etc.) Rural Appalachia needs ALL of the above, in addition to PCPs who routinely screen as recommended. |
Training: Ensure that parents and caregivers in underserved communities are informed of available service options and train healthcare workers, teachers, law enforcement officers, and other service providers to provide culturally competent services.
| Respondent | Response |
|---|---|
| Michele Lopez, The Guidance center-Early Head Start | Families with a lack of knowledge and skills to navigate services, have a great degree of difficulty figuring out how to get their child the interventions he or she may need to be successful in school and in life! |
| Jessica Easton | Education. Recognizing that these groups are less likely to understand the warning signs and to know where to go to get help. Perhaps having a social worker talk to families right at the hospital, give them a pamphlet of what could be early warning signs and where to go to ask for help |
| Anonymous | Reforming policing including replacing police with a more robust social service system. |
| Anonymous | Perhaps having special communication in those areas of behaviors to watch for in infants - adolescents. Encourage them to talk to their physician at their next visit about their concerns. Local health departments too. Get them screened and then get them referred for ASD evaluation. Learn about Autism events or free screening events. |
| Yolanda HollerManagan | Law enforcement should be aware of the differences in how autistic people respond to commands |
| Lisa Nieman, Parent | In my school district, wealthy parents pay for private school and tutors. Middle class parents pay advocates to make public school follow the law or homeschool. I witnessed a classroom specifically for ASD students (separate school housed within a school district) that was more racially diverse than my kids' classrooms. I was shocked at both the lack of academic instruction, along with draconian disciplinary practices that punished students for their disabilities. This was a living version of the school-to-prison pipeline. I paid an advocate $200/hr and a private psychologist to keep my son out of this placement. I am concerned and saddened that other students go to this classroom and others like it throughout the country. |
| Shannon Borg, autistic parent to autistic children | Make sure that the ""gatekeepers"" IE: doctors, nurses, assessors, psychiatrists and psychologists have training in cultural sensitivity. Train them using autistic people. Use autistic assessors when doing diagnosis. Stop blaming the issues on race, where people are living. Look at things through a sociopsychological economic lens. |
| Anonymous | Improve the training for law enforcement in working with the ASD populations and their families. |
| Sandra Lee, Autistic adult | The barriers to diagnosis for BIPoC and economically disadvantaged and rural people, as well as to female-presenting people in general are enormous. There is simply too much ignorance and too many incorrect beliefs about autism even among ""professionals"" that anyone who isn't a white, middle-class, non-masking young boy is far less likely to be diagnosed. Far more factual education about autism is needed for mental-health professionals, educators, etc. |
| Anonymous | Education and practical interventions for the individual and their community/family. |
| Jillian Nelson, Autism Society of Minnesota | We encourage the IACC to look at the nationwide policing problem, it is estimated that nearly 50% of all lethal police force incidents involve a person with disabilities. In 2020, the Autism Society of MN worked with POCI caucus to pass the most innovative autism training bill for law enforcement. We believe that this model creates the greatest opportunity for education that will increase the safety of the autism community when interfacing with autistic people. Lesser models of training will not improve outcomes and stand the risk of creating more stigma and perpetuating sterotypes. |
Miscellaneous: Response addresses other topics not listed above.
| Respondent | Response |
|---|---|
| Anonymous | Understanding the biology of autism can lead to treatment which will help people of all communities |
| T. A. Meridian McDonald, Vanderbilt University Medical Center | All of the issues previously describe for the other questions (eugenics, marginalization, need for tolerance and understanding, lack of research for co-occurring health conditions, lack of research to improve employment conditions, lack of affordable housing with access to transportation, lack of access to research focused on the strengths of autism, etc) apply even more to intersectional communities of racial and ethnic minorities, economically disadvantaged communities, and rural populations. |
| jean publiee | many of the alleged ""underseved"" have more sense thatn the white americans who are just falling in line and listening to fraud [redacted].they have more sense to reject this covid experimental vaccine that has absolutely nohistory behind it. clearly its effectiveness is gone at 2 months. and big pharma wants the parade of money streaming in to continue.this nation has been hurt very badly by this and the drugs to presvent covid from requiring hospitaization shoudl have been used and should be used now, [redacted]. |
| Anonymous | Lobby for legislative action. |
| Anna | Autistic people of color need more support and safe spaces, especially since they are often margainalized from the white autistic people who have a record of using their disability as an excuse to be disgustingly racist. It is up to white autistic people to educate themselves about racism, but for POC, I think we need some established national organizations for them to be able to find support especially since many of them are self diagnosed. (The community has spoken: Self diagnosis is valid.) I can't say that a formal diagnosis is reasonable to demand of people more likely to lack the economic means of affording one, self diagnosis is valid. |
| Sharon Montgomery, U.S. citizen | The needs are even more acute here. |
| Eileen Nicole Simon, conradsimon.org | All autism families are economically disadvantaged. We are all underserved. None of us can individually come up with funding for the lifespan needs of an autistic son or daughter. The epidemic of autism since the 1990s continues to be horrific. Damage in the brain, and its perinatal causes, must be urgently sought. I have provided some of my ideas above. I would appreciate being acknowledged and for members of the IACC to discuss ideas I have provided for consideration. I earned a PhD in Biochemistry back in 1975. I see a lot of scientific evidence that now appears forgotten from the late 19th and early 20th centuries. We need better research, especially on language systems of the brain. |
| Jill Goldstein | That the demographics are infinite, therefore there needs to be individualized solutions. |
| Elke Drayton | If you have a disability you already have a mark against you if you are a minority with a Disability you have a Bullseye on you. You have to proof yourself twice as hard then your other counterparts. The Stigma in the USA is that all minorities are ignorant and lazy! I heard that so many times here it made me sick. I am a Nazy because I was born and raised in Germany🤔 Can't count how many times I heard that. This Country is so hateful and I feel ashamed that all these people have European Ancestors. You all couldn't live in Europe wr are a true melting pot and live in Harmony with the exception if a few Lunatics. We all bleed red |
| Nancy Kearney, Parent adult autistic man in Massachusetts | Same as I responded to prior andwers |
| Anonymous | Autistics are more important than other groups. |
| carol staszewski | What the neuro-dominant community and autistic community can each learn about liberatory consciousness, structural oppression and the harm of unexamined/uninterrugated privilege. Focus the light on the harm of the latter. Learn from liberatory practices of POC and other 'underserved' or 'systematically oppressed' (vs. disadvantaged) populations. Situate autism and other neuro-diverse ways of being in the context of structural oppression!! As one young woman noted in a support group about her mother's worry about the young woman's getting her driving license, 'Maybe my Mom could work out her anxiety with a therapist instead of putting it on me!' |
| Melanie Curry, Ron Davis Autism Foundation | Public schools are not able to fully support autistic students because of deficits in funding for teacher training, classroom support and parent involvement. Hispanic students and their families are particularly at risk due to a significant disparity in diagnosis and early intervention. The Davis Autism Approach programs are much more affordable and accessible for people in disadvantaged communities and ethnic minorities than many other autism programs. Unlike other therapies, Davis Autism Approach program does not need continuous therapy – once the program is complete (usually after 60-120 hours), the individual has the tools to take with them to participate more fully in life. This significantly reduces the need for public (or private) funding to provide long-term support to each individual. The Ron Davis Autism Foundation provides scholarships for individuals and families from disadvantaged communities to be able to access the Davis Autism Approach programs and workshops. Currently, Facilitators offer the programs in 11 different languages. The Ron Davis Autism Foundation is committed to continued translation of program resources in order to help people in racial and ethnic minorities. The foundation also aims to train facilitators within these communities through our scholarship programs, so that these facilitators can provide the Davis Autism Approach programs directly to their communities. |
| Natalie Crum, Rancher Toads | No more ABA, fix society being ableist, shut down autism speaks |
| Peggy Hamby, Speech Language Pathologist | I am disappointed by the lack of accountability for some families receiving supplemental support. The funds need to be accounted for that they are going into treatments and support for their child. |
| Frankie Harvey-Shea | All of the mentioned communities plus the over-50 population whose needs have been totally ignored. We are the most invisible of all the communities and the most over-reaching. As we age, we become less willing and perhaps less capable of changing with the society around us. We are overwhelmed and angry at a society that expects us to ""just get with it"" when we no longer can. We've spent out entire lives accommodating the expectations of others without the social flexibility that others have. We quit. |
| Cynthia M. Parkhill | As a person who was born before modern diagnostic criteria, I am part of an “invisible generation” of people who are completely cut off from services. Any examination by the IACC concerning underserved populations needs to include older adults, particularly those who cannot afford later-life diagnosis. What are the outcomes for people like me, who have to go it alone -- who are unsupported by the ADA when requesting accommodations, because our struggles are not legitimized by formal diagnosis? Access to diagnosis late in life, as a gateway to services, needs to be a priority for the IACC. |
| Julie L Shaughnessy , Parent | Help people who ask for help |
| Harold M. Frost III, Ph.D., University of California (retiree) | Co-morbid conditions such as intellectual development disorder, general anxiety disorder, major depression, and socially related disorders. |
| Dr. Andy Shih, Autism Speaks | IACC should consider focusing on the need to increase the quality of data across the fields of education, vocational rehabilitation, workforce development, and independent living for understanding varying and emergent needs of autistic individuals and their family members. IACC should further focus on how to expand existing panels of autistic cohorts such as the SEED, as well as consider mixing of administrative and primary data collection approaches to establish a nationwide resource for human services research. |
Multiple Themes Addressed:
| Respondent | Response |
|---|---|
| Anonymous | Federal funding should be given to self-advocacy organizations such as ASAN to help serve these communities. Rural areas need broadband access to engage with the Autistic community online. Autistic organizations ran by non-autistic people should be required to hire and train autistic folks to be on their boards and hold positions in the organization in order to receive federal or state aid. Understand that Ableism is a classist, anti-semitic, and racist practice that targets minorities. Thank you Themes Addressed: Disparities, Inclusion |
| Danielle Witt | As someone who isn’t a minority I can’t imagine, I’ve had such a hard time with the school system that I can’t imagine what minorities must go through. Also, people from poverty may not be able to afford things like social skills or special needs sports programs that are so beneficial. Living in a rural population and area is frustrating there is barely anything here for my son. We drive 40 minutes into Virginia from North Carolina for therapies and sports. Themes Addressed: Accessibility, Rural Communities |
| Lisa Schott, parent and caregiver | Access to and lack of affordable quality health and dental care, vocational, educational, social and housing services particularly in rural areas- transportation is a huge issue. The Hispanic community is especially challenged as our families tend to keep our kiddos with Autism/IDD at home- language and cultural barrier issues. Themes Addressed: Accessibility, Cultural Competency |
| Anonymous | Access to diagnosis, services, and supports for underserved communities, and having culturally and linguistically appropriate services/supports. Job training--incentivizing individuals from underserved populations, rural areas, and economically disadvantaged communities to obtain training and return to their community as part of the workforce serving and supporting individuals on the autism spectrum. Themes Addressed: Accessibility, Cultural Competency |
| Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont | Everyone. Everywhere. Needs. Available. Technology. And. Accessible. Information. Make. Everywhere. So. They. Will. Understand. The. Information. For. Both. Adults and. Children with. Specialized. Learning. Needs. To. Understand. The. Curriculum and material presented for them. Rural communities in. Towns. Need accessible information technology access to the information Within the autism Community networks and other disability communities networks so they can access this information at will. Themes Addressed: Internet, Rural Communities |
| Jan Carpenter, parent of two handicapped children | 1) A lot of people in these populations don't even know what's available to them in the way of services and it's not publicized because of funding. 2) A lot of states, like Ohio rely on their counties to deliver services and make determinations which has lead to great county services in some areas to none depending on that counties income. The feds should give more funding for services. A parent shouldn't have to move to get good services. 4) Most disabled people live in poverty or rely on their parents income by no fault of their own yet the government waists money on so many things like building a $500,000 fence for Joe Biden's home. Themes Addressed: Accessibility, Outreach |
| Denise Wildrick, Autistic Adult and Parent | It is a HUGE problem. We personally had to move from rural Oregon to Phoenix AZ because our children were being denied services, an education, diagnoses and basic human decency. The school literally refused to allow my two autistic boys to come to school more than 4 days a week, half days, long before the pandemic ever came. There is no transparency on the struggles or reality of what we face. No one has gathered data or even asked us. Gather the data. Period. You cannot fix a problem that you do not know exists. Themes Addressed: Disparities, Rural Communities |
| Anonymous | ASD stigma in the black community and how that may lead to more undiagnosed kids who get labeled as ""behavior problems."" Needs to be more outreach and education to this population. Rural folks have very little access to much of anything. I live in a small city and still have very few options for my child or to refer my clients. Those that exist are lower quality and have huge waiting lists. Themes Addressed: Outreach, Rural Communities |
| Ryan | So much more is needed to recognize such people and to hear their voices and perspectives and to not have them be relegated to the margins as token gestures of others. LISTEN to them and enact what they say. For far too long, white, male, suburban or urban boys have dominated the script what what autism is. Their experiences and that of their families are relevant and valid, yet autism is soo much more! Getting access to diagnosis support and services in rural areas sorely needed. Understanding LGBTQIA+ experience of autism is necessary Themes Addressed: Disparities, Gender and Sexuality, Rural Communities |
| Helen Leung | Researching how Autism presentations can vary across community, wealth status, and gender. Increasing access to diagnosis and services for marginalized communities. Increasing funding for school-based support. Mandating Autism training for police, social workers, and other public servants that frequently interact with marginalize communities. Increasing disability payments. Creating jobs programs that don't just focus on tech and low-level service roles. Themes Addressed: Accessibility, Disparities, Training |
| Anonymous | Not applying diagnostic criteria differently depending on who the person is, where they come from, how they look, etc. Greater emphasis on ensuring those in positions of authority, public service, education, etc. do not treat these individuals differently. Not allowing people who are afraid of someone who behaves differently from the norm to be in these positions of power. Emphasis on compassion for the diagnosed individual and trying to understand why they are doing what they’re doing. Themes Addressed: Inclusion, Training |
| Elizabeth Axford | These people need to understand how their disability affects them, as well as the supports they should access to ensure maximum health and wellness. The community at large also must be educated about the needs of autistic people of color, to ensure that they don’t jump to conclusions about their intent or perceive them as violent and unruly. Themes Addressed: Accessibility, Outreach |
| Alexis Oliver Williams | Rural community, racial and gender minorities. Themes Addressed: Gender and Sexuality, Rural Communities |
| Anonymous | There needs to be advocacy services embedded in all county, state, federal and/or private agencies and facilities. Prevention of loss of services to those individuals who are unable to advocate for themselves and/or have caregivers who are unable or unwilling and/or are uninformed to advocate for their impaired clientele Themes Addressed: Accessibility, Outreach |
| Anonymous | It's important to consider how different circumstances and social expectations can impact which types of services and supports are necessary, as well as how easily those services and supports can be accessed. Themes Addressed: Accessibility, Cultural Competency |
| Ren Koloni | I've touched on this point many times already, but it all comes back to access. Utilize plain language and Easy Read formats, and understand how those formats might work in different languages. Increase access to Internet in poor and rural communities, because we tend to thrive there. Focus on gender and racial disparities in diagnosis and support, especially in schools. Autistic girls and nonbinary kids are treated differently than autistic boys. Black and Brown autistic people are treated differently than white autistic people, and are often criminalized. Research needs to hear from marginalized autistic people - in all environments and age groups - and respond to the needs and issues they highlight. Themes Addressed: Disparities, Internet, Rural Communities |
| Anonymous | There is a lack of culturally competent diagnosis and services for Autistic people from marginalized gender, racial, ethnic, and language communities. In particular, women, nonbinary, and transgender people often do not have access to autism diagnosis in childhood or adulthood and often receive inaccurate psychiatric diagnoses instead. Autistic people of color are also often misdiagnosed with mental illness due to racism. There is a lack of appropriate communication supports for nonspeaking/minimally speaking Autistic people. The unique access needs of Autistic people with other co-occurring disabilities are often not accommodated in autism services. Themes Addressed: Cultural Competency, Gender and Sexuality, High Support Needs |
| TP | We need better access to well trained evaluations and diagnosis ( not dependent on ability to pay thousands of dollars) and also not dependent on appearance. Especially for racial and gender based diagnosis- which may present entirely different. We need education for law enforcement additionally also on how ASD presents so we can prevent abuse and mis-criminalization which has huge implications of violence and lack of protection for the most vulnerable populations among us...ASD folk... Themes Addressed: Accessibility, Disparities, Training |
| Nicholas Elizabeth Faby | Increase access to diagnosis for women/girls and people of color; increase access to free/low-cost adult diagnosis. Themes Addressed: Accessibility, Disparities |
| Autistic Self Advocacy Network | ASAN urges the IACC to conduct a thorough examination in disparities and barriers facing autistic people from underserved communities across the lifespan, as well as best practices for addressing disparities and advancing equity. Areas to examine include access and barriers to diagnosis, from early childhood through older adulthood; access and barriers to services, including AAC and educational, vocational, and home and community-based services; access and barriers to health care, including mental and physical health care; incidence of co-occurring conditions; and outcomes such as educational attainment, employment, community living, criminal legal involvement, health care outcomes, adverse experiences, and quality of life. Particularly attention should be paid to intersecting identities, barriers, and disparities within underserved communities, such as the experiences of autistic transgender people of color, or autistic people from rural communities whose family’s first language is not English. ASAN also recommends that the IACC research best practices to ensure that these communities have equitable access to diagnosis and services, including access to culturally competent services and support. The IACC should prioritize research which not only analyzes disparities, but which documents best practices to remove barriers, close disparities, and ensure equitable opportunities, experiences, and outcomes for autistic people from underserved communities. Themes Addressed: Accessibility, Cultural Competency, Disparities, Gender and Sexuality, Rural Communities |
| Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin | Interface with members of those underserved populations to better understand their needs. Everywhere autism is being discussed, we need increased representation from autistic people, especially those with high support needs, nonspeaking/minimally- speaking, and the multiply-marginalized (e.g., BIPOC, gender diverse, immigrants, ageing adults). The ripple effects of a failure to serve these groups are far-reaching in healthcare, education, criminal justice, etc. Increase provider education on the needs of underserved populations. Themes Addressed: Inclusion, Training |
| Martina Kuzenski | Some important issues for the needs of underserved communities involve making evaluations more affordable and reducing stigma so parents of autistic people of color can seek evaluations for their children. Autism evaluations are not always covered by insurance and with evaluations costing at least $2,500, some parents may not be able to get their children the diagnosis they need due to services often being provided to autistic people with a diagnosis. Reduction of stigma can be done by having a strengths-based focus on autism instead of saying ""You or your child may never be able to do this"" and having representation of autistic people of color as the only successful representation people see of autistic people are white people only. Themes Addressed: Accessibility, Outreach |
| Anonymous | Things are really bad in rural areas. Every provider is super backwards and tells horror stories to parents about institutionalizing their kids. More research dissemination needs to occur. Themes Addressed: Rural Communities, Training |
| Corrie Whitmer | Again, I believe it is crucial for researchers to acknowledge that these underserved populations are also undiagnosed, and to consider carefully the inclusion of self-diagnosed individuals in these research cohorts as a method of including these populations in research. I also think that investigating how the diagnostic process fails these groups--from teacher & parent biases to flawed diagnostic tools. I believe that investigating the impact of racism, sexism, and inaccurate dominant media narratives in autism being missed or misdiagnosed in various minority populations. It is also valuable to consider the barriers to currently available services faced by the various underserved populations mentioned above--examples include a dearth of nearby services in rural areas and a lack of time to complete lengthy application processes among economically disadvantaged autistics. Themes Addressed: Accessibility, Disparities, Rural Communities |
| Beth Mortl | I worked in the inner city of Milwaukee as a service coordinator for 2 years. These families are totally underserved by the agencies that are to help them. Ignorance within the agencies and their employees greatly affect the health and safety of racial differences and poor communities. That was the hardest part of my job. Total injustice. Themes Addressed: Disparities, Training |
| Anonymous | Los resting and assessment rate in children at the earliest stages of development. Would love to see an increase in testing Im during early intervention. Communication and education to these communities is extremely important and making things affordable and in multiple languages is crucial Themes Addressed: Accessibility, Cultural Competency |
| Anonymous | Literally all you can do for them is fight for UBI and free, accessible, *ADEQUATE* behavioral healthcare, meaning providers that not only understand us, but are defintely not supremacists or dark triad narcissists. And I really cannot stress enough that out current govt is torturing children to make them more accessible to the workplace, NOT to make the workplace more accessable to us. Every single fucking nerd, every dorky convention, IT department, entertainment industry, is FULL of autistics who don't know they're artistic and currently being exploited, often while legally disabled but unaware. Again this is a massive human rights issue. My disabled labor was stolen for over 30 years. I tried over 3 dozen entry level jobs that I aced the interviews of, because those interviews select for disabled but unaware of it, people like me. Get them some [redacted] freedom from oppression [redacted]. Themes Addressed: Accessibility, Cultural Competency |
| Anna R Myers | There needs to be more diagnosis for one. But another is that there just simply needs to be more research done on how autism effects these groups differently. As well as their needs to be more aid. Themes Addressed: Accessibility, Cultural Competency |
| Jennifer Reppond, parent of ASD teenager / doctoral student | In underserved communities - education is the key. Stigma of disabilities needs to be squashed. A lot of underserved communities don't want to acknowledge any disability. This needs to change. Education of the population helps. Teacher development in understanding culture, poverty, understanding the uneducated, etc. Autism needs an understanding from all levels. It needs organizations willing to go out to the population and educate them. I have a feeling that many in underserved populations have no idea what autism is. Themes Addressed: Outreach, Training |
| Becky Rosenberg, Partners in Policymaking (Maryland) | incarceration of people with ASD and disabilities Support access in underserved communities Themes Addressed: Accessibility, Disparities |
| Roseann Schaaf, Thomas Jefferson University | Extension of evidence-based interventions to assure access by racial and ethnic minorities, economically disadvantaged and rural populations. Themes Addressed: Disparities, Rural Communities |
| Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force | 1) Identify and address the downstream effects of late diagnosis for underserved populations, particularly racial and ethnic minorities and socioeconomically disadvantaged populations whose late, under-, and mis-diagnosis is further compounded by under-allocation of education and service resources. 2) Identify and address overlapping risk factors and co-occurring disabilities driven by racial, social, and economic disadvantage: e.g. ASD children in low-quality housing have additional risk of lead poisoning from deteriorating lead-based paint. 3) Rural services access, including HCBS and vocational rehabilitation, transportation barriers, etc 4) Address education and service barriers for English Language Learner/Low English Proficiency/Language Minorities with ASD. Themes Addressed: Cultural Competency, Disparities, Rural Communities |
| Korri Ward, parent, science teacher, local advocate | Thank you for including rural in this question. Unless parents are willing to learn the laws regarding education and disabilities, advocate for appropriate education/treatment, personally fund the gaps in training/education/treatment, and actively assist in their child's programming, then the person significantly impacted with autism will struggle with aggression, isolation and lack of medical care for the rest of their lives. The burden on parents each step of the way is too much in rural Nevada and most don't do it. If parents have other children or have to work, they cannot meet the demands of a significantly impacted child/adult child with autism. We also have ABA providers that are billing full rates for ABA and providing services that yield minimal gains. Yet parents continue to use these providers, because they are the only providers. Virtual ABA services and programs at the community college to certify Registered Behavior Technicians. Why isn't the department of education training high school students to be Registered Behavior Technicians that work with a BCBA in HeadStart or Early Childhood? Why isn't the Department of Education training high school students to be supportive living assistants their senior year and placing them in the community? Why aren't their scholarships given to college students that are working as RBT's or Supportive Living Assistance? If there were at least it would help supplement the low pay rate for HCBW services. Themes Addressed: Accessibility, Rural Communities |
| Anonymous | It will be critical for the IACC to not overlook the needs of underserved populations within the autism community. Families who present to the hospital environment for acute behavioral crises very often include those families who experience disparities in accessing care on an outpatient basis. Despite families' best efforts in supporting their children at home, they share stories of never having heard of certain types of services, never having services available in their local communities, never understanding how to access services, or never being successful in accessing services (e.g., ABA services). They struggle to complete applications or make necessary phone calls if English is their second language or if they do not have access to a computer at home. They share stories of difficult interactions with police or landlords when their children are in crisis. It will be of utmost importance to keep the voices, needs, and lived experiences of underserved populations in mind when selecting priority areas for services, policy, and research, ensuring all individuals with ASD and their family members can access the services they need regardless of race, socioeconomic status, or the community in which they live. Themes Addressed: Accessibility, Cultural Competency |
| Anonymous | The IACC should consider how the current diagnostic criteria leave out individuals, especially women, people of color and those in the LGBTQIA+ community who may express their autism differently than cisgender white men. Access to diagnosis is made more difficult by the intersection of multiple marginalized identities, such as gender, race, sexuality, and class. The IACC should consider how to include those with multiple marginalized identities in their work. The IACC should interact with diverse members of the autistic community and learn from their experiences. Themes Addressed: Gender and Sexuality, Inclusion |
| Council of Autism Service Providers | Access to meaningful autism screening, supports, and services depends on the geographical location of the person with the diagnosis. The IACC should work to improve this disparity by: • Funding research specific to telehealth for people across all functioning levels with ASD. • Funding research that is specific to and inclusive of people with profound autism, who are currently excluded from most autism research. • Working with CMS to ensure that: o States are appropriately providing medically necessary care for children under the age of 21 as required by Medicaid’s EPSDT provision. o States begin paying direct service providers as well as healthcare workers who are providing either state plan or waiver services a rate that reflects the level of care they provide for people with severe autism. o States are held accountable when they restrict access to individualized settings, including congregate care settings funded by HCBS waivers and ICFs. https://www.spectrumnews.org/opinion/viewpoint/autistic-people-intellectual-disability-often-excluded-studies/ Themes Addressed: Accessibility, Inclusion |
| Lynea Laws, Ph.D., Zeta Phi Beta Sorority, Incorporated | Issues IACC should consider with regard to needs of underserved populations within the autism community, which includes racial and ethnic minorities, economically disadvantaged communities, and rural populations include the following. In the United States, about one in four people have a disability. The initiative, Healthy People 2030, focuses on helping people with disabilities get the support and services they need — at home, work, school, and in the health care system. In conjunction with this effort, more accessibility to early detection screenings will enable them to get a diagnosis, resources, and services at an increased rate. User-friendly and well-advertised information emphasizing the importance of child developmental stages and health screenings available for concerns. Fifteen percent of the US population is rural; most health determinants research is conducted in urban populations. Increased funding for research, earlier intervention services, and support will aid millions of children with ASD receive services at younger ages. These components will more likely lead to better language acquisition, communication skills, higher intelligence, and improved behavior skills. Themes Addressed: Accessibility, Outreach, Rural Communities |
| Gene Bensinger, Parent and Guardian | Outreach to develop effective policies to support underserved populations is not compatible with a Monday through Friday 9-5 time schedule, nor is it all that effective digitally. Policymakers need to engage underserved communities *face to face* in the field and outside of normal business hours. Think scale. The best way is to reach out and meet underserved communities when and where they gather. There are abundant opportunities to engage and connect with people at community, school, and provider events, which typically take place evenings/weekends. Themes Addressed: Inclusion, Outreach |
| Anonymous | 1) Service access is gated by a severe shortage of diagnosticians, outdated diagnostic criteria, sexism, racism, and ageism. 2) Other aspects of health care policy and care delivery are unintentionally harmful to autistic people or difficult for autistic people to access, even when they are for health services not directly related to autism. 3) Educational and workplace accomodations rely on an autistic person being able to prove that they are ""severely autistic"" - difficult when access to diagnosis is nearly nonexistent. The process for requesting accomodations is itself inaccessible. 4) Most care workers an autistic person encounters are poorly educated about autism and hold outdated, incorrect, and harmful beliefs about autistic people. 5) There are virtually no services for autistic adults provided outside of live-in mental health institutions, and institutional settings are usually harmful to autistic people. 6) Most services on focus the priorities and the voices of everyone BUT the autistic person. An autistic person's consent may not be required, even if the person is an adult. Themes Addressed: Accessibility, Inclusion |
| Shyla Patera, North Central Independent LivingServices, Inc. | In Rural and Frontier areas everything is often scarce and particularly for tribal and Sovereign nations! We need to ensure that those who have lived experience with both autism and other disabilities and cultural needs of their communities are showing us the best way they need to participate in their communities.I am hopeful adults with autism who are using the self advocacy model will help all of us in the United States understand needs desires and wants of the autism community Themes Addressed: Inclusion, Rural Communities |
| Michael J. Borr, Chair, Advocates for Autism of Massachusetts | It is essential that efforts such as those undertaken by the ADDM Network to measure racial and ethnic gaps in the identification of ASD continue so that it can be determined if these gaps are closing, and community outreach and efforts can be targeted to ensure that all children screened for ASD. This information can help states and communities develop and evaluate strategies to increase awareness and improve identification of ASD and referral to services in black and Hispanic communities, and in other communities where language and cultural differences may pose barriers to accessing screening and diagnosis, healthcare, and other services and supports. Similar efforts must be undertaken in economically disadvantaged communities and among rural populations where we know access to quality, affordable healthcare is limited, particularly for care requiring a higher degree of training and specialized knowledge. Demographic information and data as to qualitative characteristics of individuals with ASD and their families must be collected and analyzed to identify who is being underserved, why they are being underserved and how these gaps can be eliminated. Themes Addressed: Cultural Competency, Disparities, Rural Communities |
| Autism Science Foundation | To better serve currently underrepresented groups in the autism community, we need to find ways to include people from racially, ethnically, and socioeconomically diverse communities in autism research. ASF-supported research in 2021 identified three major tasks to address current disparities: • Support and promote diversity, equity, and cultural humility among autism researchers. This includes recognizing and addressing implicit and explicit biases against people of color in ASD assessment and diagnosis. • Conduct culturally competent research that addresses the specific needs and interests of the under-represented populations. This involves removing logistical barriers to participation in research and making the research questions themselves relevant to the participants. • Collect large, nationally representative samples from underserved communities (or samples in which traditionally underserved groups are over-represented) to assess prior findings and to learn how to better serve these communities. Themes Addressed: Cultural Competency, Disparities, Inclusion |
| American Academy of Pediatrics | Simply put, the needs of all the groups considered in this question comes down to one word: access. In order to properly diagnosis children, particularly Black and Latinx children, as well as those who are economically disadvantaged or living in rural parts of the country, we need to improve access to clinicians who can make those diagnoses. Regions where the prevalence rate of ASD is below national trends should be examined for the obstacles that are blunting access to diagnosis. Sometimes those obstacles are lack of providers and/or diagnosticians, particularly those who participate in Medicaid, while other times they are cultural, related to stigma, or lack of knowledge among parents and those who interact with children about early signs in children who might have ASD. Each of these obstacles are different and would need their own plan to surmount. Themes Addressed: Accessibility, Disparities |
| Daysi Jimenez | Estamos diagnosticando a personas de grupos minoritarios muy tarde en edad y los recursos son limitados ya que muchas veces la gente no quiere salir de su area. Sin embargo, creo que familias se andan conectando mas y mas en comunidades y buscando apoyo. La poblacion rural ha recivido un poco mas de ayuda con los cambios de Telehealth. Translation: We are diagnosing people in minority groups very late in age and resources are limited as many times people do not want to leave their area. However, I think families are connecting more and more in communities and looking for support. The rural population has received a little more help with the telehealth changes. Themes Addressed: Disparities, Outreach, Rural Communities |
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