Episode Six: Interview with Dr. Kerry Magro, Autism Author & Advocate

Autism Support Centers: Where You Can Go For Help!

The following are Autism Support Centers in Massachusetts:

Central/West Region: www.autismresourcecentral.org

HMEA's (Horace Mann Educational Associates) Autism Resource Central, 712 Plantation Street, Worcester, MA 01605

Phone 508-835-4278

This agency services about 4,000 families, and they are affiliated with Advocates, which is a large social service agency in Massachusetts. Ask about family support services, residential options for shared living, day programs Many of these services are based upon eligibility and the level of support needed.

West: Pathlight Autism Connections, 42 Russell Street, Hadley, MA 01035; also offices in Northampton and Pittsfield.

Phone number: 413-585-8010

Check out the website: https://autismconnectionsma.org/

Middlesex West Area: Vinfen/Autism Support Center, 1208A VFW Parkway, Suite 201, W. Roxbury, MA 02333. Phone: 617-206-5902

Check out the Website: https://vinfen.org/services/asc/

Greater Boston Area: Charles River West Region:

Lifeworks/Autism Support Center, 789 Clapboardtree St, Westwood, MA 02090, Phone 781-762-4001

Website: http://www.arcsouthnorfolk.org/family-autism-center.html

Northeast Region - Danvers

Northeast Arc/ The Autism Support Center, 100 Independence Way, Suite D3, Danvers, MA 01923. Phone: 978-777-9135

Check out the Website: https://ne-arc.org/services/autism-and-specialty-aba-services/autism-support-center

Research Discussed in this Episode:

Gendered Caregiving:

Dembosky, J. W., Heckert, D. A., Boser, S., & Migyanka, J. M. (2024). 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 usage and needs for adults with ASD: The importance of living situation. Journal of Autism and Developmental Disorders, 49(2), 556–568. https://doi.org/10.1007/s10803-018-3733-4 

Hays, S. (1996). The cultural contradictions of motherhood. Yale University Press. 

Marsack, C. N., & Perry, T. E. (2018). Informal support, health, and burden among parents of adult children with autism. The Gerontologist, 59(6), 1112–1121. https://doi.org/10.1093/geront/gny082 

Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. Routledge. ([Missing authors], n.d., p. 37)
Wilde, A., & Fish, R. (2024). Gender, feminism, and the project of critical disability studies (cds). Disability & Society, 40(3), 533–554. https://doi.org/10.1080/09687599.2023.2298774

Flourishing: Resource Directory

Services, benefits & navigation tools for autistic individuals across the lifespan 

To access the links to this page, please hold the Ctrl key and, with your mouse, select the link. This will bring you to the pages

National Databases & Directories

Autism Speaks Resource Guide

Searchable nationwide directory of diagnostic providers, therapists, support groups, and housing. Filter by zip

Transcript

SPEAKER_00 0:04

Welcome to Flourishing Caregiving Autistic Adults Podcast. I'm your host, Stacey Kohler, a social worker with nearly 30 years of direct clinical experience and a caregiver of an autistic adult myself. So welcome to the show. 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. It was created by Dr. Dyer and Dr. Kershua. In this episode, we will meet with Dr. Carrie Magro, who is an award-winning professional speaker. He's a best-selling author, an autism advocate, and was pre-verbal at age two and a half and diagnosed with autism at age four. He has a doctorate in educational technology leadership, and he was the co-consultant of the 2012 film Joyful Noise. Today we're going to explore the lived experience and the deficit model versus the strength-based model. We will also explore self-advocacy and ableism and neurodiversity. And we will also explore autonomy. How can caregivers support independence without taking over? Let's listen in. Hi.

SPEAKER_01 2:05

Hey Stacey, how are you?

SPEAKER_00 2:07

I'm doing fabulous. How are you doing?

SPEAKER_01 2:10

Good, good. I appreciate your patience as I was figuring out the world around me.

SPEAKER_00 2:16

Well, you know, there's a lot of challenges, and I'm a fan of yours. I've been following you on Facebook and Instagram. Would you like to introduce yourself?

SPEAKER_01 2:29

Yeah, so absolutely. So for everyone watching at home, my name is Dr. Carrie Magro. I'm a professional speaker, author, and autism self-advocate. I wear many hats within the autism realm. I am currently the consultant for Netflix Emmy Award-winning series, Love and the Spectrum US. In addition, I've worked on films such as Warner Brothers Joyful Noise during Queen Latifa and Dolly Parking based on one of the characters being in that film, and have had a wonderful opportunity to serve on advisory groups for groups such as Else for Autism, Autism Speaks, the Autism Society of America, the National Autism Association as well. And have wear many hats within the autism community over time. I was diagnosed with autism when I was four. So this is a labor of love to support the community and try to give back in any way that I can. In addition to that, I have a nonprofit organization called KFM Making Difference, where we provide scholarships for autistic students to pursue a post-secondary education in addition to teacher grants to help provide more supports for their special education classrooms. So, and I'm based in New Jersey and currently live in Jersey City. And yeah, that's a little bit about me.

SPEAKER_00 3:47

Great. And congratulations. I understand that you're engaged.

SPEAKER_01 3:51

Yes, yes. Very happily engaged. We got engaged last summer in London, and hopefully, wedding date will come up in 2027.

SPEAKER_00 4:01

The doctorate is in social work, so that's a good thing.

SPEAKER_01 4:06

Congrats. It's a lot of work.

SPEAKER_00 4:08

Thank you. It is an awful lot of work, but it's also like this, it's so near and dear to me because as a caregiver, I'm learning an awful lot. Both of my kids were like kind of mid-range, you know, in the autism spectrum and currently no services. There's a service gap in the state where my son is living. He doesn't really need a lot of help, but a little bit of cueing, you know. Sometimes I need to recommend that he do something. So I'm caregiving from far away, but wanting to really respect his autonomy. I think we should jump into the talking points that I sent you. I hope that you have that. So the first the first thing is just wondering about whether or not you want to talk about your lived experience because we need to shift, right, to a very positive and uplifting perspective where society is the barrier.

SPEAKER_01 5:08

Right. I feel like a lot of times when we have these conversations, we are often we're pitching holding ourselves in the superhero narrative where it feels like a lot of the time we focus 99.9% on strengths. And I'm not necessarily saying that in the school because in the schools I think it's a deficit-based model. But when I see a lot of people in our media talking about autism, I see a lot of conversations around inspiration porn. I see these people with their quirks and their savant syndromes. And it's really doing a disservice for those with high support needs in our community. We're seeing more and more groups in our society even today talking about things like profound autism and really trying to build more conversations around those who are going to need 24-7 care for their entire life. I mean, I think about it every single day just from the idea of my fiance's brother. I have been lucky in my career to be able to be a full-time professional speaker, travel the globe, and educate communities and societies about autism. But her brother is 30, has lived in a group home since he was 18, and will need 24-7 support for the rest of his life. And we don't really hear a lot about those stories in our media. So I think we, especially in our schools, we need to focus more on nurturing strengths. But then we also need to make sure that when these kids do have these high support needs, that they're not falling through the cracks in our educational systems.

SPEAKER_00 6:45

I agree. And I think that they do fall through the cracks, especially folks who are higher functioning. For the viewers, autism spectrum disorder was created in 2013, and it was characterized as level one needing some support, level two needing substantial support, and level three profound substantial support and perhaps safety and communication. And I called my brother in Canada, and he is a social worker in Canada. My half-brother is 48, and he would be a level three. He lives in a group home and he comes home on the weekend. And then I had another meeting with autism advocate as well. And I believe she has a level three autistic adult. And then I had another interview the same morning with another caregiver of an autistic adult level three. So I have four interviews that I can contribute to the conversation, which I think is really important because we can't forget all of the amazing things that our level threes can do.

SPEAKER_01 8:17

Yeah, absolutely. And just because someone with has level three autism does not mean that their life is any less than versus anyone else. We have to really emphasize the fact that it's all about quality of life, making sure that these individuals are still human at the end of the day. It feels like I would love to see our society normalize the human condition by talking about humanizing more of these disabilities, because the first thing I talk about when I talk to people about autism or other disabilities when you first meet someone is presume competence and get to meet them where they are and have those conversations. And honestly, regardless if you have an autistic child or not, I feel like we should be doing that for everyone, especially in our current climate.

SPEAKER_00 9:05

I absolutely agree. And I also want to validate and recognize that this isn't a very easy time for our community. So we've had a lot of tragies, a lot of successes, different things that have been in the news. But one of the things that I wanted to really hop on is that idea of assuming that the other person is can understand and that it's important not to like don't treat them like a child. He has interests, he loves Pinocchio. He's all into Pinocchio. Anytime you talk to him, he asks for Pinocchio. So he's really into Pinocchio. He's an artist. I mean, there are just some wonderful aspects. But for your lived experience growing up, are you okay with talking about that part of the service cliff? So the episode and the whole series is around the transition from coverage of services after 22.

SPEAKER_01 10:22

I think it's really important when these conversations come about to, and I gave a TED talk on what happens to children with autism when they become adults. Honestly, I think we need to do a very job in their society of educating around self-advocacy at earlier ages. I was just in Fresno State giving a lecture in California. And I was talking about the fact that I feel like every parent should write a layer of intent for their child. And a layer of intent for those caregivers who are watching is specifically, it's basically a focus on guardianship and what will happen to my child when I'm gone. And it gives people an understanding of who your child is, what their hobbies are, what their allergies are, what their interests are. And it's a great way of also helping that individual be able to self-advocate and build self-awareness for themselves. I think we also, when we talk about this whole realm of self-advocacy, one thing that my parents did for me, which is really, really pivotal, was they let me make mistakes. I feel like a lot of the times, and don't get me wrong, good intention to parents, but we still gain a model of helicopter parenting, I feel like at times. And we don't give our kids the opportunity to make mistakes and learn from their mistakes because we're so focused on their disability. We're using their disability as a crutch versus helping them level the playing field in our educational systems. So for those watching, what my parents did for me, make sure that you're allowing your kids to make mistakes. Think about the whole thing between balancing protection for that kid and also their overall independence as well, because these kids will become adults. We need to be ready for them. So think about the ways that you can build on those life skills. Think about vocational skills, think about money management. Make sure that your kids have some form of general education around AI, because AI is going to be a huge, huge vehicle that I think will help a lot of our autistic young adults be able to succeed in the future and really nurture business strength as well.

SPEAKER_00 12:37

What I love about what you say is that you're really wanting parents to help with skill development. And you're not really suggesting that parents need to really target one or two skills and try to build from that. So skill building. So the next talking point is really talking about the neurodiversity movement, ableism, and autism self-advocacy. And I was wondering if you wanted to talk about your perception of the neurodiversity movement, your ideas about how people, including myself, can identify ableist language. Like I'm learning myself as well, because some of the literature are ableist.

SPEAKER_01 13:32

Yeah. You know, it's interesting you bring that up because when we have these conversations, it's like even for myself, it's like when I think of ableism, and I honestly, some of my earliest conversations around this were learning about identity first language, which is an autistic person versus a person who has autism. Because that helped me open my eyes to neurodiversity and ableism at its core. Because I felt like for so long growing up, we always threw autism in the same realm as cancer, diabetes, HIV, AIDS. And a lot of autism organizations were like, you know what, we're going to focus primarily on the research. And there's going to be, and a lot of it was not focused on advocacy and supports to help individuals right now. And this was early 90s when these conversations were coming about, when I was initially diagnosed. And now today, you can't have a conversation about autism without bringing up neurodiversity. During the month of April for Autism Acceptance Month, I'm speaking at several neurodiversity conferences and not only April, but also then follow-up in May for Mental Health Awareness Month. And it just reminds us that when we look at autism, we have to understand that autism is not a superpower. A lot of people with autism do have challenges for their entire lives. Autism is a disability. But we need people to understand that we look at the realm of neurodiversity. Disability means limitation. Neurodiversity means having an integral part of who you are, which makes you successful. I was speaking to third graders about this the other day. I was talking about the fact that when I was 11, I learned about my diagnosis for the first time at a social skills class playing a disability celebrity bingo.

SPEAKER_00 15:34

And we were looking awesome.

SPEAKER_01 15:36

Yeah, right. And we were learning that people like Dan Acker grew up with autism. Yeah. And then want to be a crime detective, want to be a ghost hunter, and then Ghostbusters with bull Bill Murray in the 1980s. And it brought us back to these conversations about like, well, autism is a spectrum. And if you met one autistic person, you met just that one autistic person. Some people who are on the autism spectrum consider it an integral part of why they're successful today. Without my autism, there would be no carry, there would be some form of carry macro, but in terms of what I'm doing and the success that I've had in my career up to this point, uh, would look vastly different uh without my autism. Something that was challenging for sure growing up, also brought some key things that made me who I am today. So I think when we have these conversations, especially around literature and language, we just need to go in with a strength-based approach. Understand that when we talk about people who are on the autism spectrum, make sure that they realize that they are in the room with us, that we're not talking at them, we're talking with them. And make sure that that's part of the everyday conversations.

SPEAKER_00 16:49

Nothing about us without us. It's really difficult for caregivers to make that transition from your child starts to really become independent with some things, if not all things. And yet there is, like you said, helicopter parent, which is also kind of a derogatory word, right? Because it devalues the women, majority of the helicopter parents. It's difficult for mothers, particularly myself, to let go to protect the child from harm, to protect the adult from harm. How would an autistic adult be supported by caregivers? How could a caregiver honor and value them, that they have skills and yeah?

SPEAKER_01 17:43

I think the biggest thing that I just remind caregivers is that your child is the same child that you had before the diagnosis as you're going to have after the diagnosis. They just might have more supports now to help them thrive. Why I tell them that is that even if you've had a kid for 20 years now and you're seeing them become an adult and trying to help them thrive in their adult years, the importance of understanding that honestly, a lot of independence can truly help build confidence in our self-advocates today. Again, that's level one, some level two autistic people as well. And mistakes are simply again, you're not going to be perfect. No one ever expects you to be perfect. The spectrum is too wide to be a perfect parent. No one's ever going to be a perfect parent. Being able to understand that and letting go is tough. And you are your child's greatest advocate. I tell this to my parents who still live near me, like every single time I see them. They were my greatest advocates. Understand that take a step back, look in your documentation, look at those developmental models that your child has reached, see where they are in that area, and then go from there. High school students go to those child study team meetings, making sure that you are focused on some kind of transition plan to help them understand what life will look like after high school. And realize you don't have to be part of this journey alone. It takes a village. So find your village to be able, when you are having those challenges, letting go, being able to understand that you do have supports. You do have people in this world who want not only for your child to succeed, but also for you to live the best quality of life possible for yourself, too.

SPEAKER_00 19:42

Yeah. And I'm so glad that you said that. And also with respect to the level one, level two, and level three, while I do understand that there is some thoughts about that. I can't imagine labeling one of my children on which level they are in. I can tell you where they were before, but each individual who is diagnosed with a level of autism, all of those skill development, all of those supports that you can provide as a parent can really help a person to have more skills and ability and be more independent, I think. And then I just wanted to get back to that profound autism piece, that there is a movement among some parents of autistic adults, level three, who feel that they need their own category.

SPEAKER_01 20:41

Well, no, I mean it just goes back to a lot of bias in terms of the autism community, goes back to media representation. Unless you have a personal connection, government officials, Dr. C is what's portrayed in TV and film. So the most popular one for ages was Rain Man, where we had a savant, a white autistic male who's quirky and had laser focus cancerous, then we had the good doctor, then we had atypical. We're just going in like atypical a little less than the other two examples, but we're going in a constant media portrayal of one side of the spectrum. And what I'm really thrilled about, especially in the past 12 to 18 months, we're seeing a lot of parents actually speak up about how support needs autism. And we're also seeing a few documentaries coming out on YouTube that are free for people to watch to understand those with level three autism, because it has been walking a little bit of a tight group, if you will, because some autistic self advocates and other advocates often talk about the fact that, oh, you can't. Show up with someone with level three autism because they didn't give you consent. And that's based on their own autonomy. And would they ever want to see their meltdowns, their challenges on tape if they had the ability to communicate that with others? Now we're actually seeing more. And again, there's a whole conversation to be had there as well. But I feel like we are seeing a few examples of level three autism being portrayed in our media, which hopefully will lead towards larger conversations. It is in the minority right now, but hopefully we'll see an expansion of that in the years to come.

SPEAKER_00 22:37

I'd love to also link some of your books to the episode. And I just kind of like in the mid-part of our interview, I wanted to say that I did download, and Dr. Magro's books can be downloaded off of, I believe, Amazon. I downloaded one of your books and I was so excited because I found that you and I have something in common that we love Larry Bird.

SPEAKER_01 23:07

Oh yeah. Well, growing up, I could tell you all of 30 NBA teams and every single player on one of those teams. And that led before I got my doctorate, I went undergrad at Steen Hall University in sport management again, based on basketball being my key interest. So there you go.

SPEAKER_00 23:24

And the other thing was that I was a data collector in high school for a basketball team. Yeah. So yeah, yeah.

SPEAKER_01 23:33

Small world. Small world.

SPEAKER_00 23:35

Yes. I was just so tickled to listen to your story. The last beautiful question that I have for you is I told you the story about my son really wanting to live on his own. So we were able to get him to a place where he could live on his own. But how do you honor their autonomy? If you are as a parent of a child and you're talking to them, and how do parents just back up and like let the child be autonomous? Let them make their own choices, their own decisions.

SPEAKER_01 24:17

Well, I think the importance of understanding that their lived experience throughout their entire life is their expertise, which will help guide them towards hopefully having success in adulthood. They have been building towards it even without many of us knowing. And don't get me wrong, that doesn't mean that every single person is going to be shaped out to do it right away. And there's not going to be some learning curves because a lot of our kids are very concise, they're direct, and they rely on structure. So there are going to be some transitional challenges as these kids go along. But I truly believe lived experience is expertise. And also realizing this if you are a parent caregiver joining us today for this conversation, make sure that your kid has a peer that they can rely on while going through this transition, whether it's a sibling, whether it's the high school being able to establish a peer mentor role. If they're going to college, maybe they could get a shadow. Being able to have someone there to help with their own autonomy, who can meet them where they are at a peer level can be really, really beneficial towards those conversations. I was in Las Vegas years ago giving a staff development for educators, K through 12 educators, and I asked them how many of your schools have a peer mentoring program, and only three out of the 350 raised their hands. And I found that so unfortunate because peer mentoring has been shown dramatically change the lives of some of our kids, especially our kids with those social and communication limitations, giving them someone to look up to, giving them someone to rely on, and then also hopefully later on helping them build on their own autonomy. So it's a really big part of those conversations. It's not necessarily your kid into the deep end in this age cliff after they turn 22. It's about finding those right supports so you can let go and they could also be supported too.

SPEAKER_00 26:23

Yeah, I think that you're right that it is about getting the supports and the peer support idea just really is so exciting and new to me. I have heard a little bit about peer support, but it's like it's a lot for a parent at that particular moment in time to make that transition from services were guaranteed then, and it was a guaranteed benefit under the IDEA. And now it moves into a different system altogether. And trying to get those peer supports and services? I'm not sure exactly where somebody would get that.

SPEAKER_01 27:04

Yeah, there's a website called National Mentoring Resource Center.org, and that has a great blueprint on how to start peer mentoring program at your school. Focus mainly on K through 12, but it can be a good blueprint for anyone who wants to start these conversations.

SPEAKER_00 27:20

Is there anything else that you would like to say to the caregiving community who's really going on this journey, 10 episodes and learning some foundational stuff? And it's just been really fun. But do you have any famous last words?

SPEAKER_01 27:37

The typical thing I like to say is autism hasn't defined my life and I've defined autism. And I can only hope that those caregivers who are listening in can go out there and let their kids define their lives and their journeys in the way that they best see it every single day. And also realize that autistic adults can flourish in this community. We just need to give them the proper supports to do so.

SPEAKER_00 28:01

I love that you're using my word. That's wonderful. I do think that they can flourish. And I do think also that if caregivers think about caregiving from a new perspective that looks at not what the adult did incorrectly, but look at what they did correctly, join their world, understand what they're listening to, if they're listening to something. Oftentimes in the media we have these images of kids with headphones on. So that's another stereotype. Of course, my kid here does wear headphones. For caregivers, they need to really connect with their kids and also to disconnect. Yeah.

SPEAKER_01 28:49

It's all part of that process.

SPEAKER_00 28:50

It is. So thank you so much for being here on our podcast. I'm glad to be here. I feel really blessed that I had the opportunity to meet with Dr. Magro. And I really was very interested in what he was talking about in terms of the need for more leadership in advocating for different laws and policies. And what he was talking about was an ABLE, the Able Act. That was an interesting conversation. And the Able Act stands for achieving a better life experience. It was signed into law in 2014 and it created a special type of like tax advantage savings account. It was specifically designed for people with disabilities. So the able accounts basically allow individuals with disabilities to be able to save up to$100,000 without sacrificing eligibility for supplemental security income and Medicaid and several other government programs. And there was a big expansion, actually, that I just heard about. So it's very timely. It happened January 1st, 2026. And the Able Age Adjustment Act raised the age of disability onset between 26 and 46 years old. So this is really about including individuals. I think that it's really important because they previously, if they had been diagnosed with autism before 26, that's when they needed before this autism had to be diagnosed before age 26 in order for them to qualify. They also expanded the able-to-work provision, which is also now permanent, and it allows employed individuals with disabilities to contribute additional income to their able accounts beyond the annual limit. It really matters because there are so many different barriers. For example, when you think about the DPAR framework, we think about anti-racism here, right? Historically, wealth-building tools were less accessible to families of color. And really, outreach matters. So what could caregivers do? It sounds to me like this is a really good program. And I think it's something that we should look into. I think what you should do is you have to visit the ABLE National Resource Center. And I will put that on the webpage. It's ABLE NRC.org. And you basically open an account in Massachusetts. It's called an ABLEMass, but they have them in each state. And you ask to speak to a benefits counselor and see if it's right for you. Dr. Magro talked about his lived experience and his expertise. And I just want to sit with something that he said. And I think it deserves like a really deep dive. So he talked about the service cliff, that moment when a young person turns 22 and the federal guarantee of services simply shifts and ends. As a social worker with nearly 30 years of clinical experience, and as a caregiver myself, I want to tell you something that I think is important and maybe a little uncomfortable. Our profession social work has not always shown up for the autism community the way that we should have. I'll link a few articles in the podcast, but I wanted to share some research with you that kind of just made me think a little bit. It's an article, and it's called Autism Spectrum Disorder and the Science of Social Work, A Grand Challenge. And let's just say that social work is my profession. And I think that we as social workers need to advocate for this gap that I see, which is really a leadership gap in or a presence gap. And this needs to matter to us. The problem is very clear that there isn't enough understanding of a lot of these things. I think about what is going to happen to your child when they're 28, or what's going to happen to your child when they're 35 years old? What about myself as a caregiver when I turn 65 and I'm no longer able to provide the care or the support or the supervision? So if you think about it from that social justice lens, the Deepar lens, I think the point that he's making is that this is a social justice issue. This is what flourishing looks like in a community, is when the caregivers of autistic adults begin to start advocating for the community. So, first of all, as a caregiver, if you have a social worker who you're working with, and they might be knowledgeable about adult autism services, adult Medicaid waivers, or the service cliff, that's the key takeaways for this episode will be to reframe the narrative, challenge the deficit-based thinking, and Dr. Magro, the journey that he has experienced is evidence that autistic adults flourish when supported and not fixed. We also will address ableism as a disability justice issue. Inclusion requires active dismantling of barriers, not just tolerance. We'll also cover autonomy as a value. Caregivers are most effective when they amplify the autistic adult's voice rather than speaking for them. And we will amplify his lived experience. 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.