Last updated on November 26, 2023
Podcast 0003; Season 01, Episode, 03; April 12, 2018
The Autism Connection of Pennsylvania has helped me and many other autistic individuals in the Greater Pittsburgh region. I wanted to have this podcast online Tuesday, but the 3400-word transcript required some time to edit. That was time well-spent, as you will discover as you listen to this podcast episode or read the transcript.
Note: We will revise this post as time permits to improve the editing of the transcript. We also need to adjust how timestamps appear within the transcript.
Transcript (lightly edited)
Hello, and welcome to The Autistic Me.
This is Christopher Scott Wyatt. Today I’m talking to Lu Randall of Autism Connection of Pennsylvania. I’m going to ask Lu what Autism Connection is, what it does, and hopefully we’re going to explain why it is important to have help navigating the systems, especially for autistics and parents of autistics.
Scott: Lu would you please introduce yourself and what your role is?
Lu Randall: Sure. Hi, and thank you for having me here today. I’m always happy to talk about our organization we are an independent nonprofit, which is a little bit different. We don’t get any government money. We’re primarily funded by private sources, like individuals, foundations, and a little bit of corporate and why I like that is because we are fairly independent. If I need to respond to a family issue, or an autistic adult problem, I don’t have to worry about offending any particular system. We just do what needs to get done we’re quite independent [00:01:00] that way. We take about 100 calls a month for help or emails. A lot of our autistic friends might reach us through Facebook, through different kinds of social media, or through email because that’s more comfortable channel for them to communicate.
We do spend a lot of time on the phone also with families, uh with teachers, people who are here to help or in helping roles. That’s our first calls. I’ll start there. Our first calls are about an hour and we listen to all the issues that people bring up and quite often like the rest of us we might think the presenting problem is the main issue and as we listen maybe there’s something underlying in the family or in the situation that we can also help with that might be a sort of a larger issue.
So we take the calls.
We also have 64 support groups and they can range anywhere from Teen groups parenting support groups — we’ve got a group for parents of people who live in group homes — we’ve got [00:02:00] spouse support groups and grandparent support groups… just to name some. We also have some adult groups that are self-run, so they’re social groups that they run themselves and there’s some more therapeutic types of support groups as well it runs the gamut.
And we stipend anybody that runs a group $50 a month and we don’t ask for receipts. Like they can do whatever they want to with that because you know again, we’re independent we trust people to do the right thing. And so that by meeting across Pennsylvania, in coffee shops or in their houses or in libraries, and a group could be, especially in a really rural county like Cain or Warren, you know, maybe that group is four people and they stick together for 10 years and they talk about what’s really happening with their families or themselves and their community.
So that’s our main issue, our main area of support.
The thing I’ve done — I’ve been here eight years. I have a master’s in rehab counseling and what I like about that is I learned a lot about the brain [00:03:00] for different reasons. I learned about addictions. I learned about rare disorders like neuro disorders and different things. And so then when I came to autism 24 years ago, I could sort of apply what I knew about that because autism right now is still, I find, primarily a self-taught sort of discipline on the Human Services side. There’s very little taught about the science of autism, how the brain really behaves and how this is really an organic condition in colleges.
People who are teaching, people who are sometimes doing therapy, don’t know the science behind it, and that’s an issue that we try to bring to the forefront when we go out into the community and talk to people.
Our next sort of layer of support is community support we support police officers, people in the judicial system, teachers, anybody who wants to help or support or is in a leadership role in the community to understand what autism is [00:04:00] like.
Scott: So Autism Connection serves as a connector for families, individuals, public organizations. One of the things that is brought up when I talk to people is that the Autism Connection does not provide mental health services, correct?
Lu Randall: So we do in a sense that when we’re listening for that hour or an hour and half on the phone to anybody that calls — that is really a free social service and it is counseling. And that is not something you can get from your insurance companies if you’re lucky enough to have insurance. And as we listen to all that, we have (there are mainly three of us who take calls) a pretty large bank of experience of knowing who to direct the person to for support.
So we are a service connector. We can figure out what the person needs, what their personal style is like, and connect them to an organization or an individual therapist or helper in the community, like a coach sometimes a life coach type [00:05:00] of person, to help them get their needs met.
Scott: But in general, how would you describe that? When people are comparing you to some of the national organizations and they say “Well, you don’t fund research you don’t fund this you don’t…” And those of us who have been helped by organizations, like Autism Connection and your previous incarnation of ABOARD, when we are looking for advice. How do you explain to the public that this is an essential service, helping those of us who need services find them because sometimes it’s sort of an impossible system to navigate without an expert.
Lu Randall: Right. We are a 21-year-old organization and we did rebrand as the Autism Connection for that reason — that we provide connections for people to get help, but nobody else does that really. You could try to look online and do an Internet search, but you’re going to only going to get organizations who have lots and lots of money for marketing and optimization of their websites and, that’s really impersonal and [00:06:00] it’s really not specific to the person we are a community service.
When I meet with legislators, I’m told by a couple of them in particular, “You’re doing what the state should be doing. You’re doing a public service for people.” And so that is being The Listener and then The Hub for figuring out where to send that person next and also check in with them later.
“How was this referral to this therapist?” We ask them questions. Like, “Where do you live? Are you on a bus line? Do you drive?” We don’t assume anything. “Do you use email?” is a really key question I ask a lot of people. There’s a lot of assumptions other people make that now everybody’s going to find something on the Internet. Sure, if they can afford to pay for the Internet service to their house, if they have a device. You know, we still have a digital divide especially in our community, which we address through personal connections sending things through the mail and talking to people.
So that’s a service is not provided by anybody that’s a large national organization that’s [00:07:00] focused on raising money, which quite often is the case in a lot of disability or sort of disease disorder types of places.
Scott: One of the things that I find separates the autism connection from some of the other local groups is that you do work with the spectrum and the parents who have children across the spectrum you seem to be making more outreach to young adults and to adults than many other groups. How does that influence the Autism Connection’s direction when you’re trying to be sort of the complete spectrum connector?
Lu Randall: So I think, and this is sort of born out in nature, that diversity brings strength. And diversity of vision, diversity of experience, is really key we do have and we have had for five or six years — I think at least since I’ve been here — a focus on having autistic representation at the board level my bosses are autistic people and that’s [00:08:00] exactly the perfect way to run an organization like this because autism is a culture. It creates someone’s brain differently and that means they operate differently in space and in the community. And it’s up to the rest of us who maybe don’t have that set of differences to understand that and to get into that person’s mind, so we can actually support them correctly versus being prescriptive.
So what I hear from a lot of different groups who may be oppressed and marginalized that prescriptive is the worst thing we can possibly do the people prescriptive means I’m going to tell you who I’m going to treat as an “other” or a completely separate group of people what’s right for you. And that’s just completely inappropriate.
We’re autism-driven from the top. I really work in the communities.
If I’m working with police, or now we’re working on an airport project to make an autism sensory-friendly space, or more than that, maybe, at Pittsburgh International Airport, [00:09:00] that on these committees of people that we’ve got to have autism voices from the beginning — not as the focus group at the end…. Which I appreciate that people want to bring people in who are autistic like yourself, but it needs to be not brought in later, it needs to be from the beginning.
Scott: When I walk into your office, I’m greeted by employees and volunteers who have connections to the autism community. How does that give the Autism Connection an advantage to relate to those callers who or emailers who are saying, “Okay, I just had a child or I have just received a diagnosis. What next do I do other than just Panic?” How does that connection to the community really help your organization?
Lu Randall: I feel like we meet people emotionally. People call in — maybe people listening to this podcast will have had this experience if they have any other difference in their life like diabetes — it takes a while [00:10:00] to get the nerve up to make that phone call to anybody to reveal something personal about yourself when we get the call, we can pretty much say, “Look, I get where you’re coming from.” You know, “I’ve lived this with a family member or through an extensive period of work like me.” I don’t have autistic people in my family Although I’m pretty much sure that my dad’s autistic so I kind of have this sensibility that I was raised in this culture to be honest.
I think that that’s a pretty good asset when we say to people through all this experience, they might share…. The first thing they say is, “I don’t know if you can help me….” That’s almost a universal thing. “I don’t know if you can help me but….” And they’ll tell a story that we’ve heard before or we’ve lived before so we meet people very authentically and once they feel immediately understood then we can really dive into actual issues that they’re experiencing.
Scott: As a foster parent of two children with some special [00:11:00] needs, I know that my experience is that I walk into your office and I’m talking to someone who has been a single mother of special needs individuals and she’s very fast to point me in the right direction for support groups in my county, to refer me to the clinics that I might want to call — things that the county, as you said, should be doing but don’t always do.
I think that that’s a unique situation because a lot of the caseworkers I have contact with don’t have children. They’re young. They’re inexperienced. They’re often right out of college. How do you think that… You mentioned that personal connection? I think that level of empathy is also a tool.
Lu Randall: Right and if an autistic adult calls us or a parent of someone who was just diagnosed, whoever it is, I think our main message to them a lot of the time they’ll call with the situation and our message to them a lot of times is like your reaction to this really difficult situation. Whatever this is that you’re calling [00:12:00] for in a normal way and you’re perfectly normal reaction to that is however you’re feeling right now, which could be “I’m relieved. I finally know what’s going on. And I found my tribe of people that I can relate to.” or “I’m terrified because I see terrible things in the media and I don’t know what’s going to happen.”
Whatever their emotions are, we understand it. We let them know that we accept them for wherever they’re at. And that that then I think that conversation is more realistic and that we can help them get exactly the supports that they need in their house or that they need in their community because everybody’s different.
If I have an autistic adult call in most of the time I’ll refer them to somebody else who’s autistic through email and introduce them in writing because spoken communication on the phone is often a really difficult thing so I’m not going to just zip them out a phone number to call. That’s just not the best way to go.
Scott: Your services are primarily provided in the Greater Pittsburgh area.
Lu Randall: Right. And we work across the state I say we provide a lot of service [00:13:00] in the services in the Southwestern PA five-county area, but we’ve got support groups in Lehigh, Scranton… all across the state.
Scott: If someone wants to locate your organization, online first, what is the URL for the for the website?
Lu Randall: So we’re www.autismofpa.org. It’s autism of PA like Pennsylvania dot org.
Scott: And from that website, I know that you provide a subscription to an autism newsletter, which always has some breaking news and current events.
Lu Randall: Right the mission of our blast which is every Friday is to provide hope and information we really avoid what some of the larger national places will go for, which is like pity and fear because that can raise money for them, I guess. But, that’s just not what we’re about our, yeah, our weekly blast — people tell us they really rely on that for information. They can read about research they can read [00:14:00] about cool cultural events that we connect with, that we partner within the community, and get more ideas to make that in their community if it’s not where they live.
Scott: If someone’s in another state or another region and would like to facilitate something like Autism Connection in their State, uh, could they go to Autism of PA and send you an e-mail?
Lu Randall: Sure, they can give us a call. We’ve got a toll-free line. We get calls from the Bahamas, from Italy, from Egypt, because people find us and we’ll help anybody that calls us. We don’t say, “Well you’re not around us, so no, no dice.” We just try to help people solve their issues or support them wherever they are.
Scott: The last thing I want to conclude with on this episode is you mentioned that you are largely supported by donations from private individuals and organizations. Is there a space on that AutismOfPA.org website where someone can make a donation or is there a way that they can offer their support to such an essential service?
Lu Randall: Sure. Yep, every uh, I think [00:15:00] page on our website has a donate button in the upper, right? I think it’s orange or yellow. But yeah, and there’s just lots of ways people can support us and we’re really grateful for people that do.
We’ve got great school districts right now that first of all have us come in to teach about autism and then they’re like kind of say, “Okay, come back not just for the teachers, but can you do a parent night and can we do peer acceptance?”
We can talk about that maybe in a later podcast?
But, they’re doing things for us like jeans days where they have dress-down days and they’ll donate whatever.
Any dollar we get in here is one dollar more than we had yesterday there’s no donation too small
Scott: And that’s really the key. I know my wife and I have benefited from your services. I know many colleagues have benefited, parents and autistics and you survive through the generosity of a network of people who have run into you.
I know the board members generally have personal connections. Many of your donors have personal connections. But someone [00:16:00] doesn’t have to have a personal connection to offer support.
Lu Randall: Right and kind of like, uh, I’m finding that’s our donors that kind of repeat. People with autism and their families, 25% under-earn what other people that don’t live with a chronic development disability have because parents are home taking kids to therapy, or on call if the nurse needs something for their child at school.
Forty percent of people with autism have epilepsy there’s a lot of emergency or neuro healthcare needs or mental health needs that people have….
I do not really push our families to give. They give what they can and I really like to look for people who have tangential connections or just want to support a place with a really transparent mission. People can walk in here like you do and see what we’re doing every single day and I’m really proud. My staff is amazing. They’ve been here a long time. They give their hearts they give their time and they share their life experiences and so do our board members. And that’s something you just can’t put a [00:17:00] dollar amount on that.
Scott: Well, thank you.
I’ve been talking to Lu Randall, the Executive Director of Autism Connection of Pennsylvania. If you want to learn more about the organization, remember to go to the website, Autism of PA dot org. They exist through the kindness and generosity of individuals and private organizations.
Again, thank you for listening to this podcast, and I look forward to our next meeting.
Lu Randall: Thank you.
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