Episode One: The Service Cliff, Gendered Care, and Knowledge Gap

This episode introduced the realities of caregiving for an autistic adult at the transition from K-12 mandated support services to the fragmented adult services landscape. We explored the service cliff, when services end. We examined how caregiving is often placed upon mothers, and we also looked at research that found most caregivers have a knowledge gap about supports and services that are available after high school.

Here are some helpful links:

Autism Self Advocacy Network (ASAN):
https://autisticadvocacy.org/

Drexel Autism Institute (A.J. Drexel Autism Institute):
https://drexel.edu/autisminstitute/

Department of Developmental Services (DDS) Adult Application (Massachusetts): 

 https://www.mass.gov/lists/dds-eligibility-forms

Department of Developmental Services (DDS) Adult Autism Resource Guide (Massachusetts):
This is the link to the resource guide we discussed in our episode
https://static1.squarespace.com/static/518bb7cde4b0d1e7bd9c37b5/t/5c58694253450a702c533881/1549297988292/DDS+NE+Region_2019+Adult+Autism+Resource+Guide_Final_020419.pdf

Resources to Help with Services Navigation for Every State

Thank you for tuning into Flourishing: Caregiving Autistic Adults Podcast series. Please take a moment to review the attached resources that may assist you in navigating your caregiving responsibilities beyond age 22. 

The Association for Autism and Neurodiversity (AANE) is located in Massachusetts; however, they offer their support nationally, to every state. The organization understands the caregiving journey, and many are caregivers themselves.

Here are Some AANE Programs That Pertain to The Service Cliff

Benefit Navigation and Guidance: AANE is aware of the supports and benefits by each state and can provide you with this information. They also offer a free webinar on finding public benefits for autistic adults and can tailor the information to your specific needs.

Support Groups and Coaching: AANE offers support groups and individualized help for the specific issues you are facing.

Contact Information: AANE: www.aane.org

85 Main Street, Suite 3, Watertown, MA 02472

(UDL and Situated Learning Theory Support this; add it to each episode's webpage for easy accessibility, starting where the caregiver is.)

References

Bishop-Fitzpatrick, L., Dababnah, S., Baker-Ericzén, M. J., Smith, M. J., & Magaña, S. M. (2018). Autism spectrum disorder and the science of social work: A grand challenge for social work research. Social Work in Mental Health, 17(1), 73–92. https://doi.org/10.1080/15332985.2018.1509411

Dembosky, J. W., Heckert, D., Boser, S., & Migyanka, J. M. (2023). Shouldering the burden: Intensive mothering and autism. Family Relations, 73(2), 807–825. https://doi.org/10.1111/fare.12943

Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P., & Klinger, L. G. (2018). Understanding service use and needs among adults with ASD: The importance of living situation. Journal of Autism and Developmental Disorders, 49(2), 556–568. https://doi.org/10.1007/s10803-018-3729-0

Flanagan, A. Y., Cola, M., Yu, N., Peele, H., Dicette, K., Hicks, G., Pelella, M., King-Pointer, A., Owens, J., Truong, D. M., Hauptmann, A., Pacheco, J., Russell, A., Lee, A., Schillinger, S., Covello, M., Lyons, M., Solórzano, R., Turnacioglu, S.,...Parish-Morris, J. (2024). Policing black autistic children: A qualitative ap

Transcript

Stacey Kohler, LICSW 0:03

Welcome to Flourishing, Caregiving of Autistic Adults Podcast. I am your host, Stacey Kohler, a social worker with nearly 30 years of direct clinical experience. I'm a mother of two autistic adults and the sister to a brother in Canada who has severe non-ferbal autism. I'm also the niece of an uncle who had a severe developmental.

Stacey Kohler, LICSW 0:28

So I want to highlight a social justice framework that underpins this episode. And it's called DPAR. It's a framework that really helps social workers look at all aspects of social problems. And it stands for diversity, equity, inclusion, intersectionality, power, analysis, and anti-racism. It was created by Dr. Dyer and Dr. Gershua. The podcast will examine the viewpoints and experiences of caregivers of autistic adults who are transitioning to the adult service environment. The podcast will consist of 10 episodes, during which we're going to examine really the positives and also the harsh realities that are faced by caregivers of autistic adults and the systems that we navigate. We'll also examine how we can support one another and foster a sense of community across the podcast website. This series is dedicated to translating years of research into lay-person language and to bring the lived experience and narratives of caregivers as well as the autistic adults. We're going to share information. We're going to also share detailed step-by-step guidance on issues such as attaining adult support systems, creating your own social support team and network of people that will help you, and how to apply for some supports and services such as Medicaid waivers, SESI, SSDI, vocational rehabilitation, and much more. We will examine the realities that this often means when maternal caregivers must leave their employment and become case managers full-time for their autistic adults. And if you just laughed out loud at leaving your employment, I definitely hear you. The reality is that most of us are juggling jobs. We can't afford to quit recruiting grandparents, aunts, uncles, neighbors, and in my case, my sister-in-law. So I realize that I'm using identity first language when I talk about autistic adults. So let's dig in just for a minute, because I'm using the identity first language to honor the autism self-advocacy network and how many of the caregiving community refer to their experience and their loved ones. So person first language is very much the norm nowadays, but I just wanted to cover that and let you understand my perspective. I also want to introduce you to the strength-based parenting perspective, which basically underpins my podcast. It's a way of being in the world with your family. You look at what's good, what is working, and you really amplify that. So I want to highlight a social justice framework that underpins this episode. And it's called DPAR. It's a framework that really helps social workers look at all aspects of social problems. And it stands for diversity, equity, inclusion, intersectionality, power, analysis, and anti-racism. So in this podcast series, each episode, we'll be discussing an issue related to social work and social justice. In this episode, we'll touch on equity issues and anti-racism issues in autism care. When we discuss delays in diagnosis, services impacting certain communities disproportionately. And when we talk about the caregiver warriors, we'll be talking about their lived experience and the idea of inclusion and intersectionality. We're also going to talk about some social justice issues regarding inequitable formulas for distributing assets in states and also the diverse nature of caregiving itself. So let's dig in. We recognize that not autistic adults require full-time support and that there are varying degrees of independence. Yet we are speaking to the reality that each year, about 50,000 autistic adults transition to adulthood at age 22. That means that each year there is an increasing number of autistic adults with many talents and abilities. And these adults need to feel supported and loved and encouraged. And we need to figure out what their interests and passions are so that we as parents can really help them thrive. One of the reasons why we're doing this podcast is because we want to give the information to caregivers of autistic adults. And we also want to provide some context and information for providers in the community who are interested in learning a little bit more about what it's like to be a caregiver, what it's like to navigate support services. And oftentimes what we are finding in the research is that this information, the information actually about what is available for supports and services, is not oftentimes easily available. Later on in the podcast, we'll hear about how some of this information is hidden behind paywalls, academic journals, and gray material agency information that we may not necessarily know about. I want to emphasize that there are transitional services for youth. However, most families may not know about them, and that is why we are going to be covering all of that. So let me be clear. In Massachusetts, there is a transition program. It should start around the age 14 in the child's IEP meetings. However, some adults, and we'll find out, transition to adulthood without any supports in place, and the family is unaware of the services which are through the habilitation or mass rehab and the Department of Developmental Services. We also want to emphasize that you are an excellent advocate for your adult child. And oftentimes what we find is that parents have navigated the service cliff for a very long period of time. And we'll talk a little bit about what the service cliff is in a minute. But know that you are your adult's best advocate. The primary audience for this podcast is caregivers of autistic adults. Caregivers span the entire family as well as non-family members, custodial parents, and that the secondary audience that this is designed for is for providers in the community who would like to learn a little bit more about autism itself. If you are getting advice and recommendations from relatives or friends asking you, what is the plan? What is going on? What is the claim for the future? Is your child going to get a job? Are they going to work? What's the story? I'd like you to just kind of pause and step back and say thank you very much for asking that question. But right now we are focusing on really self-care and getting our supports and services in place. What is your child going to be doing? So put it back on them and ask questions to them. With regard to advocacy, advocating for your child is the number one priority, then akin to self-care. So we are going to look at all things caregiving, including caregiving yourself. The notion that autism is increasing in prevalence is not new, according to the Centers for Disease Control. The incidences of autism now is one in 36 children, and it really affects every community. The population of caregivers, maternal caregivers are multiracial, multicultural. They're from many different social and economic groups. Let's look more closely at caregivers of autistic adults. These mothers are often considered midlife, age 45 and over. They have already experienced two decades of challenges, successes, and changes over the course of their lived experience. These caregivers have gone through initial diagnosis and have sat with their child along with autism therapists using behavioral therapies or other therapies, but also artwork, which has been a lifeline for my family. These mothers have experienced a decline in supports during middle school and by high school, which there is a decrease in supports and services. This is due in part by funding shortfalls and structural factors. Autism is a spectrum disorder and different for each individual. There is challenges in social interactions and communication. There may be some behaviors you may see that are repetitive in nature, and kiddos may have intense interests in hobbies and certain subjects. Before the autism diagnosis changed in the fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual, there were several diagnostic categories, such as pervasive developmental disorder, not otherwise specified PDD NOS, and Asperger's syndrome. The research shows us that moderate to higher support needs among autistic adults makes them need daily assistance with executive functioning, getting them up and prompting them to get dressed and may need considerable support, such as my brother. Symptoms early on range from requiring some support to substantial support. The lived experience of these caregivers is witnessing and helping their child with symptoms, such as perhaps headbanging, mood irritability, and other co-occurring mental health challenges such as attention deficit, hyperactivity disorder, ADHD, ADD, anxiety, depression, and other challenges. Currently, there are considered three levels of autism that are defined by the level of severity. Level one autism refers to individuals who require supports. Level two autism is characterized by the individual requiring substantial support. And finally, level three autism, where the individual requires significant supports and maybe nonverbal. Did you ever wonder how the Centers for Disease Control and Prevention, the CDC, gathers the data? There are 16 surveillance sites that are across the United States and they look at information, and the program is called the Autism and Developmental Disabilities Monitoring Network. According to the report from the Autism and Developmental Disabilities Monitoring Network, there is a growing number of autistic individuals, despite the fact that we know that there's an increase in the autism community. There's a lack of advancement in programs that are developed in order to train service professionals like social workers, doctors, nurses regarding autism itself. And a lot of researchers indicated that there's an increase in diagnosis, specifically in the UK, by about 787%, which is a lot. There was a study by Russell and his colleagues in 2021, and he talked about how there is a rising diagnosis among adults and also female autism. There is more focus on testing. There's more of a focus on understanding the population. And there was also a change in the diagnosis itself. The number of adults who have autism are increasing. The reality and the harsh reality, many autistic adults are living at home and they do not have access to covered supports or services. And there's a high level of unmet needs. So why is it that many individuals with autism do not currently have services in place? In order to have services in place, families need to be aware of how to access supports and what supports are out there. But the reality is that there are many factors that are involved with choosing which path to take. What does the adult want to do that would really resonate with them, their interests, their passions, and what is their ideal day looking like? Is work something that needs to be considered? Let's look now at realities that parents experience, specifically mothers, that take on much of the role of caregiving. The current trends for this community is that maternal caregivers are not monolithic. Their identities basically span black, indigenous, people of color, BIPOC, multicultural, multiracial, and physically disabled families, and they face many systemic barriers. Researchers are also noting that caregivers are aging, they have multiple medical issues, and there's an impact on the well-being of mothers. And the literature review was talking about how they navigate the service cliff in light of the multiple identities that they hold and the barriers to service access. There's a lot of challenges that maternal caregivers in general face in accessing those supports and services, and a number of those challenges are due to not knowing what the services are, and there's a total lack of care coordination from the high school to the postsecondary setting. Additionally, there's challenges to attaining health care for some of these kiddos. There's unmet health needs for this population, there's restrictive policies in health insurance itself. There's a lack of coverage. Some of the medical and mental health care issues are due to cuts in federal funding for some programs, according to a paper that was completed by Tolfison. Oftentimes families find themselves on their own. Before we go any further into the research, I wanted to just pause and share a lived experience, a personal narrative, because I think it's important that you know who I am and what lens I'm bringing to this conversation. My daughter yesterday was telling me about an artwork project that she was doing, which she had to complete an artwork project that was like a collage. And in it, she had to talk about who she was as a person, how does she identify? She's starting a sociology class. And I thought that was really cool because what she was really talking about was her positionality. My positionality is that I am a white cisgender female, married, mother of two autistic kiddos, and a sister. I have lived experience as a caregiver, and I really try to focus on the strengths perspective. And I want to share a little bit about my background, my knowledge, and my worldview so that you can get to know my perspective and what informs not only my work, but how I approach being a parent to two autistic adults. I believe that my experience as a social worker and a caregiver really situate me to share some lived experience, as well as the fact that my worldview is that I'm definitely, I believe, a feminist. And I prioritize relationship building, I prioritize empathy, and I also believe that relationships are interdependent. And from what I see in caregiving, my realities is that the relationships that we have, caring for a person with a disability and co-creating a life together, is about being interdependent. I did some research and I have discovered that I am both an insider and an outsider. It means I don't know what it's like to care for my brother with severe autism who lives in Canada and is cared for by my siblings. But I am impacted by what he is experiencing and the conversations that we have. There, I'm an outsider. In research, when we talk about research in general, we are looking at whether or not you're an insider or an outsider. So there I would seem to think that I'm an outsider. But caregiving to autistic children who recently transitioned to adulthood does make me an insider. And I want to also address in my positionality, my access to society's rewards and privileges finds me at a point where I do have unequal access to resources and my socioeconomic status does buffer me from some realities, but it does not ensure that my adult children have access to supports that currently do not exist, like coordinated transitions. Listeners with similar experiences to myself may see me as a person that I understand perhaps some of their lived experiences as they navigate adult services. To those listeners, I hope some of my experiences resonate with you and I honor our difference. Listeners who do not identify with my background, I honor your diverse perspectives, and I hope that I can adequately respect how racism intertwines with ableism and our shared caregiving experiences can bring us together. And I have one adult living at home who's 22 years old. And we're going to talk a little bit about what it's like to be a caregiver and to really focus on what is the number one strength that I can bring to our relationship. One of the things that I would say is that oftentimes we think about kiddos and adolescents and Autistic adults or adults spending a lot of time in their room. My view is that we as parents should really figure out what is it that they really enjoy doing as you walk down the hallway to their bedroom, knock on the door, and wait for permission to go in and ask, and then find out what is it that's really resonating with them right now? What is it that they're passionate about? What are they up to? Oftentimes when I do that, I find that my autistic adult is really focused on some sort of project or some sort of artwork. And I really want to be really resonating and supporting the process that they are up to. Let's look at the first thing that I wanted to discuss today. We talked about a term that I'm not sure that everybody knows about, but it's a really cool term. So I want to talk about it. It's called the service cliff. It refers to a period of time when services that were guaranteed by the Individuals with Disabilities Education Act or the IDEA, totally end. The service cliff basically has been here for the past 40 years, ever since the bill, the IDEA, was passed. And I know that a lot of people have a familiarity with hearing the ADA or the IDEA, but it's an interesting story how it came about. In the 1970s, individuals with disabilities and their families literally climbed the federal buildings, the state houses, and demanded basic civil rights and universal access. The law that was passed as a result, Section 504 of the IDEA, the disability justice movement is the movement that we're talking about. It occurred in the 70s. It was a response to and a continuation of civil rights, and it really was an amazing time. One of the things that I want to talk about is disability critical race theory, which basically builds on disability studies. It's particularly important to talk about critical race theory because we acknowledge that there is ableism and racism, and it has impacted access to supports and services, how funding has been designed, the policies, the entire routine professional practices have really contributed to challenges to this community. And autism families understand that they're at the crossroads of disability, race, gender, class, immigration status, and sexuality and gender. So there's a layer of marginalization and a layer of intersectionality, which is really important to understand that as these identities compound, it makes things a little bit more challenging, especially at the service cliff, because the institutionalized withdrawal of supports occurs from the mandate of guaranteed federal funding for educational supports and special services. And then the transition goes under the ADA, the Individuals with Disabilities Act and Section 504 of the Rehabilitation Act of 1973, and that if you look at how the programs are funded, scholars have that the structure of the funding itself and how they allocate part of the funding to the states puts larger cities at a disadvantage where you find that there are more low-income individuals, BIPOC individuals, and individuals that are disabled. The funding disparities is pretty persistent and exists because the formula that is used for the funding distribution puts some at a disadvantage while privileging others, and many states have some issues now because the IDE is the big law that basically covers K through 12 services. You may know that the IDEA, those services basically said that individuals with special needs would be eligible for specialized supports and to be able to have free access to education. And the Department of Education is the branch in the government that does oversee that program. The changes in the program itself and the supervision of the IDEA has had some impact, and there are significant challenges that have arisen. The problem is compounded by the fact that the schools itself do not offer advice or mentoring for caregivers, and most caregivers don't know there are things that their kiddo is eligible for after the age of 18, such as Social Security Income, SSI, or Social Security Disability Insurance, SSDI. And there are some employment, college, or transitional supports and access. And in a study by Shay, they indicated that there was a lot of emphasis on the need for coordinated transition planning at age 22. And what we have found also is that there are some concerns. There's a loss of struct when all of those services are lost. But there's also an unmet employment need. There's unmet vocational training needs. There's a lack of continuity between adolescent services and adult services. And there's also a significant decline in the routine care and therapy that they used to have. And for parents who have to coordinate the adult services, they're finding that there are a lot of wait lists and a lot of applications that need to be completed. It's important for us to really understand, I think, what the IDEA was and when it was passed. Because as parents, we are like advocates for kiddos. It's imperative that we know that the IDEA was passed in 1973, and the funding was promised to be by the federal government up to 40% of the cost of special education services that are provided by this school. Research has found that it was never fully funded. In fact, it was only funded to about 11%. So the law was passed in response to the major disability rights movement. We've hear in the news today that some senators are pushing for the IDEA to be fully funded. They know that it is a concern, but according to research and some scholars, there's an actual formula that's used to distribute these resources, and they're not equitable. It puts a burden on larger cities that have a larger, more diverse community that's not getting the care that they need. And we will now examine how individuals advocate for these services and how the universal design movement grew. I remember hearing a story about individuals with disabilities who climbed the stairs of a state capitol and really crawled up and sat in because they wanted to have access to supports and services. When we talk about advocating, we're also talking about parents who attend community meetings, educational planning board meetings, create relationships with community partners, discuss services and supports of community colleges, and connect with the local autism societies. And what they are asking is they're asking for having accessibility to supports and services that a lot of folks with special needs require. One of the talking points I want to talk about right now is gendered caregiving. I know that when I initially said mothers or maternal caregivers, it was because I was focused on maternal caregivers in my research. But we know that caregivers are a wide gamut of folks. There's obviously mothers, fathers, grandmothers, aunts, uncles, siblings, cousins. A lot of individuals are involved in caregiving. There's also a word I wanted to talk about, which is kinship care. In some cultures, there are a number of individuals in the community that offer to help to support. But one of the things that I found in the research is that there is gendered caregiving. When the autistic adult loses supports and services, oftentimes a disproportionate impact is on maternal caregivers. And what they do is they adjust their work schedule or they decrease their working hours outside of the house. And what they're doing is they want to provide physical, emotional, and mental support for their autistic adult, helping them with skill development and care coordination and a number of studies that have been done. And those will be linked in the website. I want to take the opportunity to talk to you about my personal experience. In the next part, we're going to hear about my two-year-old. When the second child was diagnosed at age two, there was nothing I could do. I needed to be at home, even though I had a very successful career as a full-time hospital social worker, working in the surgical intensive care unit and also working in the outpatient department, where I frequently would get page to the lobby or the inpatient ward. My two-year-old was engaging in self-industred behavior. I was constantly there, either with her or holding her. I was a social worker at a hospital. So at that time, I knew a lot of the support. So I was able to call early intervention office in the town in which I lived. And I asked for an evaluation. I also had health insurance through my employer that did pay for a majority of the neuropsych testing that was required. So I definitely needed to get a neuropsych evaluation. And that was accomplished for both kiddos. My older son was diagnosed with Asperger's and ADHD, and he was very active, let's just say. And my younger child was diagnosed with PDD NOS, progressive developmentally disorder not otherwise specified. And at that time, I felt for sure that they were giving me that diagnosis for my child so that I could access supports and services for her. I would say I was in denial. But anyway, when that occurred and we got a diagnosis, the school suggested early intervention. And there was a suggestion of having a service called Applied Behavioral Analysis, where somebody comes into the home and sits with your child and really teaches them how to talk and how to listen and how to sit and how to wait and how to use hex at that time, which were pictures that you could point to. And at one point, my daughter pointed to a picture that said, I want, and then another picture that said cookie. And she actually said, I want a cookie. And I can tell you that I ran to the kitchen so fast because that was the first full sentence that I ever heard her say. The picture system that my daughter used was called PUX. And it's an example, what's known as universal design. Universal Design was first started by Ron Mace, who was an individual who utilized a wheelchair. He was also an architect and he designed spaces so that they would be accessible for everyone. Universal Design for Learning is a movement that really has helped individuals with special education needs to get accessible supports and services. There's an organization called CAST that published and presented the Universal Design for Learning Core Principles, which is basically to make sure that students have multiple means of engagement, multiple means of representation, and multiple means of action or expression. Some of these support services that the adult used to have, the autistic adult used to have, that are terminated at the service cliff are services such as behavioral interventions. Like, for example, we talked earlier about applied behavioral analysis or EA. Also, occupational therapy was a very valuable support, which helped cognitive processing and dexterity, speech therapy to help improve in vocal tone and to work with the picture schedules and also special education support. So the absence of really as in guidance and a well-coordinated transitional program to adult services and not knowing really what is out there results in social isolation for both the caregivers and the autistic adults. And next, let's look at the enormous knowledge gap that is among caregivers of autistic adults and the lack of information that caregivers have on the transition to adult services. The research shows that the services are fragmented, that the information is hidden behind paywalls, and academic research is inaccessible because of that. The availability of those services is behind gray literature, which means families would need to understand where to look to uncover the access to those services. For example, you would need to know that you would apply to the Department of Developmental Services adult division for your child who's transitioning to adulthood. You would need to know that you would go to the Department of Developmental Disability in the state in which you live, and you would need to go onto the website and learn about that. You would need to know that you would apply for Medicaid. In Massachusetts, it's called MassHealth. And that would be another application that you would need to apply for. There's definitely an evidence of continued ometany. There have been many studies that have indicated that navigating adult services is one of the most complex examples of hurdles that caregivers go through. So let's dive deeper into the research. Researchers in the United States found that there was very low awareness of adult disability services. A majority reported that there was no adult service representation that attended their last transition meeting with the education department at the school. Students have a transition meeting that is through their IEP individual education plan. This very important research study was conducted by Sanderson and colleagues in 2025. It was just published actually. And they conducted an online survey with caregivers of autistic adults, and their survey results were significant. As parents' knowledge gap was significant, and they concluded basically that parental awareness and filling this knowledge gap was a top priority. When the youth transition to adulthood, they often do not have a well-structured, mandated care advocate that points caregivers in the right direction. There's no full listing of resources that were provided to parents and instructions on how to create a strategy and plan for moving forward. There is a desire to want to work, make their intensive interests and passions translate into employment opportunities, and caregivers and autistic adults want to reach their full potential, create a life that is interesting. On this podcast episode's webpage, you will find a link to a brochure that was compiled by the Department of Developmental Services in Massachusetts, and it's titled Adult Autism Resources Guide. It was printed in 2019. The guide provides information on the Autism Omnibus Bill of 2014, how to apply for adult autism services, information about applying for the Department of Mental Health, and information about Massachusetts Rehabilitation Commission to apply for education and vocational training. The guide covers information on LGBTQ, emergency services, insurance, and benefits folks are eligible for, and how to attain transportation supports. This podcast is to help with the knowledge gap among caregivers of autistic adults and to discuss what programs and services might be available and also to build community. What is flourishing really? Flourishing means that you're thriving as a family. Flourishing means that you're finding the positive aspects and strengths of the individual, and you're creating space to identify those strengths and to build a meaningful life together. The podcast is a 10-part episode. It's going to have two speakers. One is an autistic adult themselves, who's now a national speaker, as well as an autism advocate. And we'll also have a Substack where we'll have a system where each podcast. Episode is going to be introduced. The Substack, however, will go deeper into the research with research links and also downloadable guides, connection to different websites or supports and services that we talk about. I think that it's important to just acknowledge that autism self-advocacy is really important and that we are trying to engage in a podcast that basically centers the caregivers' experiences, but we will also be amplifying autistic voices and perspectives. So in this episode, we examine the service cliff and how this impacts the entire family unit. And this lived experience is indeed challenging. The lack of support and care coordination is really very difficult. And the responsibilities rest largely on maternal caregivers. So it's important to look at this as an opportunity to address systemic failures so that we can advocate policymakers for access to more information on these structured support services that are available. In our next episode, we'll explore the impact the service CLIF has on mothers specifically, and we'll look at a step-by-step instruction on how to apply for Medicaid, SSI, and SSD. We will explore the research on the impact of maternal caregivers who shoulder much of the responsibilities regarding raising an autistic adult. We will also look at ways that caregiving impacts their well-being, the roles of being a guardian, a supporter, and a case manager all at the same time. We will also look at how the act of caregiving for someone with special needs has enriched their lives and has given them a sense of direction and leadership in their advocacy for their children. We will look at the research that shows mothers do experience pressures to fulfill the needs of their families and experience episodes of self-blame and also absorbing other individuals' perceptions towards how they provide care for their kiddo. We will also look at ways that caregivers look at themselves as successful providers who have overcome any hurdle that comes their way. We will look also at the history of autism spectrum disorder as it pertains specifically to the lived experiences of caregivers. Many studies and podcasts focus on autism diagnosis itself, but we will look at some historic examples of maternal advocates, such as Lorna Wing and Clara Cleborne Park. Thank you for listening to Flourishing Caregiving Autistic Adults Podcast. Together, we'll build a community. Please remember to subscribe to my channel. I have included links to several resources attached to this episode that include the Autism Self-Advocacy Network, the Drextel Autism Institute, in case you would like to learn the latest current statistics on autism, and the Department of Developmental Services Resource, which is an agency to apply for adult supports. Thank you so much for joining our caregiving community. Please remember that you are doing the best you can, and we need to advocate for our adult children to safeguard the legislation we fought tooth and nail for. Maternal caregivers, parents, disabled advocates fought for the rights to benefit from living at home and being able to have supports and services in place so that they could be maintained in the community. Those laws that we fought tooth and nail for, those are the laws that we're concerned about. We want to make sure that our loved ones are cared for and loved. Thank you so much for going on this caregivers journey with me. I'm Stacy Kohler. Thank you very much. Please don't forget to subscribe to my channel and check out the webpage for more information. So thank you for listening to Flourishing Caregiving Autistic Adults Podcast. Together we'll build a community. Please remember to subscribe to my channel. I have included links to several resources attached to this episode that include the Autism Self-Advocacy Network, the Drextel Autism Institute, in case you would like to learn the latest current statistics on autism, and the Department of Developmental Services Resource, which is an agency to apply for adult supports. We've also included a link to the Mass Ability Program. Thank you so much for joining our caregiving community. Please remember that you are doing the best you can, and we need to advocate for our adult children to safeguard the legislation we fought tooth and nail for.