Autism Awareness and Acceptance

Awareness month or acceptance month? Either way, April is all about autism. In this episode, staff member Rebecca Coates takes the mic to spotlight books and podcasts about autism's history and social experience, with an emphasis on autistic self-advocates. 

Later, she talks to Jennifer Cretella, Kaitlyn Fenner, and Marilena Mademtzi, three representatives from Clifford Beers Community Care Center, about Clifford Beers' services for families with autistic kids, Autism Services & Resources Connecticut (ASRC), and the annual Walk for Autism and Resource Fair.

We hope you enjoy!  

Further Reading

• Neurotribes: The Legacy of Autism and the Future of Neurodiversity - Steve Silberman 
• Unmasking Autism: Discovering the New Faces of Neurodiversity - Devon Price 
• Spectrum | The Transmitter 

• Connecticut State Department of Social Services - Autism 
• Interagency Autism Coordinating Committee (USA) | Direct link to Resources Page 

• The ARC 
• Autism Self Advocacy Network 
• Autistic Women’s & Nonbinary Network 
• The Color of Autism Foundation 

• The Reason I Jump and Fall Down 7 Times, Get Up 8 –Naoki Higashida 
• Thinking In Pictures – Temple Grandin 
• Look Me In The Eye - John Elder Robison 
• Autism In Heels – Jennifer Cook 
• Sincerely, Your Autistic Child - Various authors
• Neuroclastic 
• The Thinking Person’s Guide to Autism 

See our blog page for April 2024's episode for links to other podcasts and links to authors mentioned in the podcast

Transcript

Rebecca Coates: My name is Rebecca Coates, and I am your host for this episode of the Hamden Public Library podcast. Our topic for this episode is autism awareness and acceptance. Throughout the episode, I'll be using the terms autistic person and person with autism interchangeably, unless someone I'm referring to or quoting prefers one over the other. 

We'll be talking later in the episode with representatives from Autism Services and Resources Connecticut at Clifford Beers, but as you may have noticed, everyone in the episode is talking about autism. It's a limit of the format that you won't hear from nonspeaking library patrons, Clifford Beers clients, or nonspeaking autistic self-advocates. 

People who look like me are overrepresented in autism research, autism advocacy organizations, and images of autism in pop culture. This is slowly changing, like in the sampling for the study that yielded the stats Dr. Mademtzi quotes in our interview, but this change is a work in progress. While all the information in this episode is as accurate and up to date as the sources we consulted during research, staff at Hamden Public Library are information workers, not medical workers. As with all information the library provides, the content of this episode does not replace the advice of medical, legal, or educational professionals.  

No one actually knows when the condition which is now called autism was first noticed. The term autism was only coined in 1911, so people exhibiting autistic traits before then may have been called "mad", or "changeling", or other umbrella terms for invisible disabilities like autism or for mental illnesses with similar symptoms and different onset causes that have nothing to do with my western, Anglophone understanding of history and folklore. 

In the past 110 years, advances in medical science and understanding psychiatric conditions have moved autism from a symptom of schizophrenia to its own condition. Dr. Mademtzi describes it beautifully using the metaphor of art, but this understanding of autism as just another way of seeing the world is relatively new. 

Neurotribes by Steve Silberman is a history of autism as we understood it when the book was first published in 2015, but Silberman was limited by the sources he had access to. The evidence for certain facts we now know, like the extent to which Hans Asperger was complicit with the Nazis, were buried in archives. 

And Silberman incorrectly attributed the origin of the term "neurological diversity", or neurodiversity for short, to a single person when it was co-created by autistic self-advocates on mailing lists called "Independent Living" and "Autism Network International" in the mid-1990s. 

Medical professionals have also advanced many incorrect stories about autism. Now discredited theories about causes and treatment include that autism is the result of so-called "refrigerator parenting", meaning a lack of parental emotional warmth, that it can be cured through any number of pseudoscientific therapies, and most dangerously, that it can be caused by vaccination.  

If you've been listening this long, you probably realize that there are a few different groups of people who all have a stake in autism conversations: autism researchers, parents of people diagnosed with autism, autistic people themselves, and people who fall into two or more of those categories, like autistic parents of autistic kids or autism researchers that are autistic themselves. A lot of the time, these groups are only providing partial representation of the entire autism conversation, like Autism Speaks being founded by grandparents of a child with autism. To get a perspective on how it feels to be left out of the autism conversation from the autistic self-advocate's side, you might want to look at sites like The Thinking Person's Guide to Autism or books like Unmasking Autism by Dr. Devon Price. 

Lots of autistic people and autism parents find community using social media like Instagram, TikTok, and microblogging sites, or use those platforms to get personal narratives from people on the other side, so to speak. There's nothing wrong with that or with a good meme, but please remember that social media is also great for spreading misinformation about most topics. Autism is no exception. It's as easy to spread fear and conspiratorial thinking online as it is to spread awareness. Maybe it's easier. I mean, it's outside the scope of this podcast episode, but literally, there are studies published in international peer reviewed journals that say as much. 

Instead of engaging in toxic discussions or believing something a friend or influencer shares because you already follow them, seek out other sources. I wasn't kidding when I said earlier that nothing in this episode replaces the advice of medical, legal, or educational professionals. But between the doctor's office and your favorite microblogging site's newsfeed, there's a variety of other stories and resources. 

When it comes to resources for Connecticut residents, listeners can visit the State Department of Social Services Autism Spectrum Disorder section, especially their "Related Resources" page. The U.S. Department of Health and Human Resources Interagency Autism Coordinating Committee's resources list is another great online source and also includes links to councils and agencies in U.S. states and territories other than Connecticut.  

Self-advocacy organizations like the Autism Self-Advocacy Network and the Autistic Women and Non-Binary Network, "AWN", do advocacy work at the national level. The ARC does advocacy work for all people with intellectual or developmental disabilities. Check out their local chapter, state chapter, and national page, starting at thearc.org. The chapter for Hamden is The ARC of Greater New Haven, which is actually based here in Hamden.  

African American autistics and their families might also want to look at a 501c3 called The Color of Autism. On their website, they describe themselves as "deeply committed to fostering inclusivity and support for African American families navigating the world of autism.” 

Spectrum is an online archive that was invaluable to me for reading researchers perspectives on autism and the push-pull between autistic advocates, researchers, and people who are both. It used to be an active publication, but it evolved and was rebranded as The Transmitter in autumn 2023. It's still a good resource, but about neuroscience in general, not just autism. 

When it comes to personal narratives, there are so many stories to read, listen to, or watch. Neuroclastic and The Thinking Person's Guide to Autism have short form essays from people in the autism community, including non-speakers. Unmasking Autism by Devon Price, that book I mentioned earlier, is about what he calls "masked autism" in general, but also includes autobiographical stories from Price's own life. 

Thinking in Pictures by Temple Grandin is generally regarded as a classic. This is partly the result of prestige – I mean, Temple's an adult- diagnosed autistic savant, with the support of family and a doctorate in animal behavior. Claire Danes played her in an HBO docudrama. – and partly the result of Dr. Grandin having decades of experience communicating with non-autistic people before she ever published about living as a person with autism.  

Look Me in the Eye by John Elder Robeson and Autism in Heels by Jennifer Cook are memoirs from parents who got their diagnoses after their children were diagnosed. And again, The Reason I Jump and Fall Down 7 Times, Get Up 8 by Naoki Higashida are long form memoirs by a non-speaker. 

A book we don't have in Hamden's collection, but I really want to highlight, is Sincerely, Your Autistic Child: What Your Autistic Child Wishes You Knew, with essays by 29 autistic adults sharing what they wished their families knew sooner. As with all LION media Hamden doesn't have in our buildings, you can place a hold for Sincerely, Your Autistic Child online, or call the information desk for help placing holds.  

When it comes to podcasts, I suggest The Loudest Girl in the World by Lauren Ober if you want a firsthand account of what it's like to be diagnosed as an adult woman, and Spectrumly Speaking with Haley Moss and Dr. Lori Butts for conversations about autism and mental health. Usually the guests are autistic self-advocates, and they're usually women. I try to keep up with Divergent Conversations: a Neurodivergent Podcast with Dr. Megan Anna Neff and Patrick Casale for more serious conversations, and the Autistic Culture Podcast hosted by Angela Lauria and Matt Lowry, because it's fun to learn about pop culture through an autistic lens. 

Something else that's fun from autistic creators is genre fiction. If romance fiction is part of your definition of fun, try contemporary romance authors Helen Hoang, Talia Hibbert, or Chloe Liese, who all write stories where the heroine, hero, or maybe both happen to be neurodivergent. Usually autistic, but not always. 

If you're into comedy, we have the memoir from Hannah Gadsby. They're an entertainer. Their international breakout moment was probably Nanette on Netflix, but they were known in Australia as an entertainer before disclosing their autism diagnosis. Lastly, if you're listening to this in April, which happens to be the US's National Poetry Month, consider reading poems by your favorite neurodivergent poet. 

A contemporary poet who has disclosed her autism diagnosis before the publication of her most recent work is Morgan Harper Nichols. The most recent book is You Are Only Just Beginning, and you can also find her zine and master’s thesis work on her Instagram. We'll pop a link in the show notes if you're curious. 

We're here with three representatives from Clifford Beers Community Care Center. Would you all please introduce yourself?  

Jennifer Cretella: Sure, so I'm Jennifer Cretella. I am the VP of Business Development for Autism Services and overseeing ASRC at Clifford Beers. 

Marilena Mademtzi: Hi everyone, my name is Marilena Mademtzi. I'm a Director of Operations and a Behavior Analyst at Clifford Beers.  

Kaitlyn Fenner: Hi, my name is Kaitlyn Fenner, and I am the Associate Director of Outpatient and Autism Services here at Clifford Beers.  

Rebecca Coates: All right. And we did invite you here today to talk to us some about autism and your services in that area. So how would you explain autism to a non-expert?  

Marilena Mademtzi: That's a great question. And it can be difficult, especially if we consider how autism sometimes is portrayed in the media. But I like to use art as my example for this. Imagine if everyone were an artist, but each person has different set of brushes and paints and techniques. 

Some people might use watercolors while others prefer charcoal or oils. Similarly, autistic individuals have their own unique tools for understanding and interacting with the world around them. It's important to remember that autism is a spectrum and not a one size fits all and each person's experience is unique and they have their own strengths and challenges. 

Just as no two artworks are exactly alike, no two individuals are exactly alike. By recognizing and appreciating this diversity, that's how we can better support and uplift each individual.  

Rebecca Coates: Oh wow, that's a beautiful way to explain it. I don't think I've heard it compared to art before. And what's the prevalence of autism given the most recent statistics? 

Marilena Mademtzi: So CDC estimates that one out of 36 children now in the United States received an autism diagnosis. And currently 5. 4 million adults in the United States have an autism diagnosis, which accounts roughly a little bit over 2 percent of the population. And I was looking a little bit more in Connecticut and it fits those statistics and there are a little bit over 60,000 adults currently with autism. 

Rebecca Coates: Very interesting. And something I've also noticed is that, just in the past and during research for this is that, like, in the news, a lot of times I see information about adults disclosing autism diagnoses that they might have been missed as children. Are there, like, reasons why they may have been missed? 

Marilena Mademtzi: Yes, many, many individuals have been missed and they have received diagnosis later on. And this might be for different reasons. For example, the diagnostic criteria have changed over time. For example, once what was considered within the range of like what we call neurotypical behavior may now be recognized as indicative of autism. 

Also, with many autistic individuals, we have co-occurring conditions. This means that they might have an attention deficit hyperactivity disorder, an anxiety disorder. And sometimes, the manifestations or signs of these diagnoses can be more prominent and autism can be recognized later. Also, we see masking or camouflage, especially with females, where they try to hide some of these signs in order to fit better in the society, and also the awareness that Over the years has increased, so people are more familiar now with such diagnosis, so they're seeking that, but also access to healthcare and resources. 

Not every area has specialized diagnostic assessment access, and we also see underserved communities struggling even more so, and they face those barriers to obtaining timely and appropriate evaluations.  

Rebecca Coates: In July of 2013, Clifford Beers acquired Autism Services and Resources Connecticut. To provide a bit of context for listeners, can you tell us what Clifford Beers and ASRC are individually, and how do they work together? 

Jennifer Cretella: Sure. So back in July, so only about nine months ago, ASRC, after about 27 years of being its own standalone organization, came under Clifford Beers Community Care Center. And the reason for it was mainly so that the organization can remain sustainable as the cofounders of the organization kind of phased into their next chapter of life, but they wanted to make sure that the organization remain active and helping families navigate the autism landscape. As you might know, ASRC as they're commonly known as is an organization that has built a lot of different community partnerships that then help families to connect to those partners. 

They provide a resource line and an online resource directory which is filled with close to 600 different services and resources for families to connect with and help support the families and their kiddos with pretty much any kind of service or resource that they might need. And then our resource line is a way for families to call in to ask for advice, ask for direction, and ask for some assistance with those connections. 

So the piece that ASRC offers is a non-clinical indirect care piece, whereas Clifford Bears Community Care Center and Kaitlyn and Marilena's teams help provide the clinical aspect of the work, the direct care piece. So the two pieces coming together allow us to really help a family put together a full continuum plan of care so they can get access to all the services and resources a family might actually need. 

Rebecca Coates: Well, that's wonderful. And I understand that the services for Hamden families are based out of New Haven. Is that your only location?  

Kaitlyn Fenner: Sure. So right now, all of our clinical services for autism for Hamden area residents is housed at 93 Edwards Street in New Haven. This is where all of our clinical programs are being seen in addition to our Guilford office. The Guilford office has the availability for the same type of services that we offer in New Haven, but making it available to a different area of individuals.  

Rebecca Coates: Oh wow, and are these services all done in person or like remotely or hybrid? 

Kaitlyn Fenner: So we have the opportunity to have both of those things happen. Sometimes families will prefer telehealth due to distance from the clinic or scheduling restraints. We also have a lot of individuals that live in group homes that participate in our services and they don't always have the availability to make it to our center. 

So we do do telehealth in those cases. Typically we do that with adults. If you're ages 10 or under, we pretty much see you in person just because of the modalities that we need to use and the interaction that we need to have is much more appropriate and lends itself to the in person work. 

Rebecca Coates: Very interesting. And where can listeners go to learn more about the Clifford Beers Community Care Center?  

Kaitlyn Fenner: So our website is CliffordBeersCCC.org and we have all of the information about our individual, group, family therapy that we offer, as well as care coordination, medication management services, and testing. 

Rebecca Coates: All right. One of ASRC's yearly fundraisers is the Walk for Autism and that includes a resource fair. Can you please tell us about this year's Walk for Autism and resource fair? 

Jennifer Cretella: Sure. So we're really excited that we're keeping this wonderful event going. We know that it has been a staple event for ASRC for as long as the organization has been around. 

And over the last couple of years, they decided to take their annual resource fair, which was a completely separate event, and tie it into the walk. And by doing that, we have heard - and they heard - that a lot of families really liked the event tied together because it provided families with a support system on the day of the walk so that other family members could kind of go off and do some family fun activities with the children and have a good time while the parent or caregiver was able to walk the resource fair and be able to talk with and connect with various services and resources that they might need access to. 

So we're really excited to keep that going. The event is happening on Sunday, May 19th. And it's happening back over at Quinnipiac University's North Haven campus in the backside of the campus by the law school. Registration opens at 8 a.m. and the walk itself kicks off at 10 a.m.  

Rebecca Coates: Oh, cool. Does it happen rain or shine, or is there a rain date? 

Jennifer Cretella: It does happen rain or shine. One of the exciting things about having it at Quinnipiac University's campus in North Haven is they have a very large, very cool parking garage that allows us to move the whole event inside into that parking garage so that we can have the event rain or shine. The resource fair is actually already stationed inside the first floor of the parking garage so that they are undercover no matter what. 

All of our activities that are planned for that day would also be brought into the first floor. The food trucks would be stationed right outside the parking garage, and then the walk itself would happen amongst the floors within the garage. So we have a way to have this event outside if it's beautiful and sunny, or inside if it's raining. 

Rebecca Coates: Oh, that is very, very cool. You were saying earlier about registration. Is there a day of registration or does everyone have to sign up ahead of time?  

Jennifer Cretella: So we do have day of registration. We prefer people to sign up in advance just so we can get a good feel for how many people are going to be present. Mainly so we can make sure that we have enough volunteers on hand. We also need to provide some information to Quinnipiac University's public safety team. And we also have police officers on site that day for the purpose of the walk. So we'd like to be able to know how many people will be around the grounds, but it's not necessary. 

Rebecca Coates: That makes sense. Do you have to make or join a team to participate in the Walk for Autism?  

Jennifer Cretella: Absolutely not. You can certainly just come and walk on your own or just walk with your own family. But you definitely do not need to create a team. We love seeing team spirit because we have a lot of teams that dress up or have one unified t-shirt that they all wear. But you certainly do not need to be a part of a team to participate.  

Rebecca Coates: All right. And as we said earlier, the walk is a fundraiser. Can you give us some examples about how the money raised might be used?  

Jennifer Cretella: Sure. So the money that is raised at this event will help support our recreational programming. It will help us to continue to build out our social groups, our skills groups. 

We're also bringing back a group that ASRC used to have before COVID, which is called "Learning from the Littles" group. So it's a early childhood social skills group that we'll be bringing back. So all the funds that are raised, 100 percent of those monies will actually go to benefit the services and the groups that we provide at Clifford Beers. 

Rebecca Coates: Oh, wow. That is, you know, that's wonderful to hear. If a person wants to sign up to walk or donate how do they do that online? 

Jennifer Cretella: Yeah, so they're just going to visit ctwalkforautism.com and that will bring them to our walk website. They can register individually, they can create a team, or they can simply make a donation if they're not available to join us that day.  

Rebecca Coates: Thank you so much. One of the programs I saw you all offer on your website is a camp. Can you tell us some more about that? 

Kaitlyn Fenner: So we do have an autism focused summer camp. It's at Camp Farnam from August 19th until August 23rd. We're offering both half days and full days and this is a fully functional state licensed camp in Durham. We consider it an inclusive camp so it has activities that all neurodiverse individuals can participate in. 

This year for the first time, we're actually allowing the younger sibling of the person with autism to join them at a 20 percent discount. So it's actually going to kind of be an autism focused and sibling focused summer camp, which we're really excited about. There's opportunities for swimming, outdoor games, basketball, volleyball, hiking. There's a ton of kind of different opportunities for kids to experience camp, especially if they've never been able to experience it before. 

It's a structured environment, but it also gives them the opportunity to socialize, meet with other kids and individuals and kind of have a really great time.  

Rebecca Coates: Okay. So, like, if a kid with autism maybe doesn't do well in the mainstream camp. You know, they can apply for Camp Farnham and they can even attend with a sibling who either is neurotypical or doesn't have their diagnosis yet. 

Kaitlyn Fenner: Exactly. We try to make everything as kind of adaptive as possible so that it is really inclusive. Last year was our first year running the camp, and we had individuals that loved to be the center of attention and participate in every activity, and we had others that preferred to hang back and draw with chalk on the cement while other people played basketball. 

Everyone kind of found what they enjoyed, although I have to say, it seemed like everyone's favorite activity was swimming and getting to know the lifeguards. 

Rebecca Coates: Oh, well, for sure. Like, swimming is one of the most fun things about a summer camp, at least in my opinion. 

Jennifer Cretella: It definitely was for our kiddos last year. Also just to make note, the camp is located in Durham and it's not too far from Coginchaug High School, just as a reference point.  

Rebecca Coates: Okay, and I'm sure you'd answer this more for potential campers and their families, but is transportation the family's responsibility, or is there, like, a bus?  

Kaitlyn Fenner: At this point, unfortunately, transportation is with the families just because we offer the camp for essentially anyone statewide. If you can make it to us, we're willing to serve you. Much like our services, you know, we kind of consider ourselves to be a hub in the state, and so we have people that will travel from all different areas. And so it makes transportation very challenging for us, but I know that last year we were able to try to support some families through scholarships and things like that. So if we have someone who's receiving services and wants to come to camp, but can't necessarily make it work, we always try to work with them so that they can be a part of it.  

Rebecca Coates: Thank you for the clarification. It all sounds wonderful. Thank you so much for your time. 

Jennifer Cretella: You're welcome. Thank you.  

That's it for this month's episode of the Hamden Library Podcast. This episode of the Hamden Library Podcast was produced and recorded by me, Rebecca Coates, and edited by Mike Pierry. Thank you to our guests from Clifford Beers: Jennifer Cretella, Kaitlyn Fenner, and Marilena Mademtzi. 

Thank you for listening. We'll be back soon.