Tag: merge

Thoughts from HDI’s Brittany Granville On Autism Acceptance Month

Posted on | by Glen Jennings

While it’s important that autistic people have their place in society, Brittany Granville believes autism acceptance goes beyond that. She thinks it can save lives. 

“So many autistic people, particularly autistics of color, have died because people don’t understand common traits of neurodivergent people,” Granville, who works with HDI’s Innovative Supports for Autistic Workers (ISAW) project said.

And saving lives can be as simple as recognizing that just because someone acts differently than others doesn’t mean there’s something wrong with them. 

“For me, autism acceptance means that there is an effort to acknowledge that some people are just different and that’s okay,” she said. “It means that you could see someone stimming or pacing back and forth in public and not automatically assume they’re on drugs or ‘up to something’ and that you need to call the police on them.”

The intersection of multiple identities among autistic people is important too, Granville said. Autistic people have consistently been proven to be more likely to have LGBTQIA+ identities, and so discrimination against one group will always harm the other. In particular, she highlighted the harm that obstacles to affirming care for transgender autistic people can cause. 

“Autistic people already have high rates of depression and suicide,” she said. “Not being able to access medication or express themselves in a way that makes them feel themselves only makes it worse.”

In addition, Granville said autistic people of color are often overlooked. 

“There’s the lack of awareness and acceptance in communities of color,” she said. “These people are often considered ‘just like that’ or ‘weird’ or ‘crazy’ are most likely neurodivergent but ignored by their communities, the medical system, schools, and often the autistic community itself.”

Across the whole community, though, Granville noted that the best thing that can be done to support autistic people to let them be themselves.

“The best thing non-autistic people can do is try being as non-judgmental of the ‘weird’ people around them,” she said. “Learn what autism is and don’t try to make us ‘less autistic.’”

And a part of that is recognizing that autism can look very different from one person to another – or even the same person, depending on the day. 

“The autism spectrum isn’t linear. No one is ‘a little autistic’ or ‘low’ or ‘high’ functioning,” she said. “An autistic person’s abilities can fluctuate widely by the day or even hour. A person can be energetic and friendly at noon and totally withdrawn and unable to talk at 6 p.m. Changes can be due to sensory input and social factors or it could just be a ‘low battery day.’”

This article represents the opinions of the author and interviewee, not that of the University of Kentucky. 

Thoughts from HDI’s Bev Harp On Autism Acceptance Month

Posted on | by Glen Jennings

Bev Harp, Project Director for HDI’s Innovative Supports for Autistic Workers, remembers the days when the only rhetoric about autism was awareness rhetoric. 

And she remembers that awareness could mean radically different things to different people.

“To some people that meant being aware that autistic people exist

and that autism is a disability and needs to be accommodated. To others, it meant being aware that there are more and more of us being identified. You would see Autism Awareness buttons that said things like ‘1 in 88. Are you scared yet?’” She said. “This was the heyday of the vaccine panic, so you’d see those messages about poisoned and ruined children too. Pure fearmongering.”

In the past few years, as the number of recorded autism cases has climbed to 1 in 36, a new idea has started making the rounds. 

Instead of autism awareness, focus on autism acceptance. 

April is Autism Acceptance Month – a time for celebrating autistic people and advocating for a better world for them. And there are a few key differences between the two ideas – awareness is simply focused on knowledge of autism. One can be aware of autism. Acceptance, on the other hand, focuses on building a society that is inclusive and welcoming to autistic people. 

“We don’t need a ‘cure’ for autism, we don’t need to change autistic people so they seem more neurotypical, but what we need is to build a more equitable society where we can all thrive,” Harp said. “We are allowed to take up space and to participate in whatever facets of society we choose.”

And that means reframing the way that our society approaches autism and views autistic people. 

“We are now seeing more than 2 percent of our population fit the criteria for autism,” Harp said. “It’s time to stop thinking of autism as something to be remediated and recognize that it is and always has been one of the many natural and neutral ways to be human.”

And with that, there are many barriers to still overcome. 

“We still have around 85 percent unemployment. We still have people being tortured at the Judge Rotenberg Center and other institutions ‘for their own good.’ Kids being segregated, adults deprived of autonomy,” Harp said. “Of course, eugenics would be the ultimate form of ableism. The search for the ‘cause’ of autism has always been wrapped up in a fantasy of a world without autistic people. Somehow people can picture their autistic loved ones as still themselves yet also entirely different.” 

And while there is a lot of work to do, it is worth noting that autistic community has created a powerful shared community among autistic people. Harp said that the term autistic culture has had quite a journey over time, starting just as a term to describe art, traditions and practices common to autistic people. From there it came to represent more and more as autistic people shared more of their interests and passions. It became about those passions and how autistic people relate to them. 

“My favorite aspect of autistic culture is the pastime of taking any sort of source material (a movie, a conversation, a piece of feldspar), the simpler the better, and analyzing it and turning it over to see every angle and finding out what else in the world it echoes or connects with,” she said. “Loving a thing so much that you must attend to it properly, you must know that you’ve had every possible thought you could ever have had about it. It’s not in the nature of the thing (object, person, idea, activity), but in how an autistic person interacts with the thing.”

In the end, Harp knows understands that people calling for awareness mean well.  are sympathetic for autistic people, even when calling for awareness. She challenges those people to consider where their sympathy compassion is coming from and consider where it could be better used. 

“They see that the lives of autistic people can be tough,” Harp said. “Why is their best solution getting rid of us and not making the societal changes that would allow us all to live better lives? Why would we prefer to rewire a brain rather than change a policy? What values are we demonstrating here?

This article represents the opinions of the author and interviewee, not that of the University of Kentucky. 

Thoughts from HDI’s Walt Bower On Autism Acceptance Month

Posted on | by Glen Jennings

For Walt Bower, Preservice Training Coordinator for HDI, there’s an important first step to take when talking about how best to support autistic people. “People need to learn what autistic people want them to know,” Bower said. “That is why I prefer to talk about autism acceptance instead of autism awareness.” Bower’s perspective falls in line with a shift that’s becoming more and more popular in how organizations and people are talking about autism. And April, which used to be called Autism Awareness Month, is consequently being reframed as Autism Acceptance Month for a lot of people.   

“I think this shift reflects input from autistic individuals and other community leaders as well as our commitment to sharing how we can promote advocacy for human and civil rights for all usautistic people,” he said. And that change in language is important, Bower said. Often, those calling for awareness do so without the input of autistic people. As a result, it’s been less helpful.  

“Sometimes, autism awareness campaigns, albeit well-intentioned, can make people who are not familiar with autism afraid of autistic people,” Bower said. “It has done more harm than good…It’s presented autistic people as bad, or autism as something that needs to be cured.” So if it doesn’t need to be cured, how should people approach autism?  

According to Bower, a big part of it is accepting that autism isn’t abnormal. “I think we need to think about disability and autism as part of life,” Bower said. “We need to recognize disability and autism as one integral part of diversity. Autistic people can get stigmatized as just being autistic when autistic people have many different identities, as leaders, students, workers, employers, parents, family members. Autistic people have and lead rich and fulfilling lives that are shared with the people all around us.”  

He also highlighted some of the models through which disability is viewed – in particular, the medical model of disability, which views disability solely through a lens of conditions that need medical intervention, a problem that must be solved, and the social model, which thinks of autism as just a part of human diversity that deserves to be accommodated. Bower also spoke of another model that he’s intrigued with that tries to find a way to incorporate elements of both models. He’s excited to see where those discussions lead and to learn more in the future. But he thinks it’s important that those discussions always seek to include a diverse range of people with disabilities, autistic people included.  

“The slogan of the disability rights movement is ‘Nothing about us without us,’ which means that autistic people need to be involved whenever autism is discussed,” Bower said. “We want to make sure that autistic people are included in conversations about autism, whether those conversations are about lives of autistic people or autistic people as a whole in our society…Autistic people know the problems that autistic people face, and have a lot of ideas how to solve them.”  

This article represents the opinions of the author and interviewee, not that of the University of Kentucky. 

HDI Celebrates Developmental Disabilities Awareness Month 2023 with Amanda Stahl

HDI Celebrates Developmental Disability Awareness Month

Posted on | by Glen Jennings

This month (March), HDI celebrates Developmental Disability Awareness Month. For some people, that may lead to questions about what defines a developmental disability. Developmental disabilities are conditions that begin during development and usually last throughout a person’s life.

For Amanda Stahl, LCSW, it’s a wide spectrum. 

“It’s a disability that happens before the age of 18,” Stahl said. “A disability that affects your daily life skills. It affects your development, how you become who you are as a person.” 

But at the same time, Stahl stresses that there is a human being behind every label and every diagnosis. 

“In my work, I don’t focus only on definitions. I focus on people’s stories,” she said. 

As part of her work with Merge, an HDI project focused on improving mental health access for individuals with mental health conditions and developmental disabilities, she’s helping ensure those stories are told. 

Merge seeks to improve the mental health systems that support people with co-occurring mental health conditions, and intellectual and developmental disabilities. Stahl is one of the researchers interviewing people with lived experience for Merge. 

“Some of the work that I’m doing is going around Louisville and going around to different parts of the state and collecting people’s stories around their experiences with mental health and disability,” she said. “What were the good experiences they had, what were the negative experiences they’ve had, what would they want to recommend to other direct support professionals and providers?” 

Stahl thinks that isolation, loneliness, and societal expectations placed onto some people with disabilities can have a tremendous negative impact on the mental health of individuals with disabilities. 

“It’s not done on purpose,” she said, adding that some have difficulty find more positive ways to think about themselves until they find ways of building community and experiencing inclusion. “People with disabilities may be isolated from other people with disabilities, including older people with disabilities,”

She also noted that she sees patterns in the interviews she’s completed. For example, she finds that even experienced mental health providers can have difficulty working with people with developmental disabilities, especially those who are in more controlled environments. Sometimes individuals, she says, may not feel like they have the space to feel or process their emotions. Another thing that she noted is that a lot of individuals with lived experience feel like outsiders. 

“Knowing my own story, a lot of their stories are very similar,” Stahl said. “I felt like I was the only one until I met this one person.” 

Stahl hopes soon to do more research on individuals in day programs to get an even wider view on what the community’s needs are. From there, the information will be used to develop training that will be designed for individuals and providers around the state. 

“I’m trying to get stories from the most impacted people,” she said. Ms. Stahl stressed that people often underestimate others due to disability – something she says is a mistake. 

“There may be limitations to what someone can do,” she said. “But always assume people can do more than you think they can.”

Amanda Stahl, LCSW, is a Disability and LGBTQ+ Activist from Louisville, Kentucky. Amanda is the lead organizer and director of a non-profit organization called the Independence Seekers Project (ISP), organized and developed by people with intellectual and developmental disabilities.

Merge Logo.

HDI introduces new mental health project: Merge

Posted on | by HDITrex

The University of Kentucky Human Development Institute introduces a new project: Merge. The project will strengthen the existing training framework serving Kentuckians with co-occurring mental health, and intellectual and developmental disabilities (MHIDD). By evolving current training, Merge aims to increase and improve the application of person-centered services and referral systems. 

Merge hopes to build stronger connections across systems in Kentucky, including state agencies, medical providers, medical service providers, LEND trainees, families, and individuals with MHIDD.

Merge will work with a team of state partners that includes people with lived experience. This team will identify existing resources, needs, gaps, and priorities. Existing resources will be strengthened and will address racial, health, and economic inequities in underserved communities. Once gaps and needs are identified, universally-designed supports will build a trauma-informed, and recovery-oriented framework for application. These efforts help fulfill Merge’s goal to increase understanding and improve the implementation of person-centered, culturally relevant services and referral systems.

For more information, contact Kristen Dahl at kristen.dahl@uky.edu.