Welcome to ”The Story We Share,” a series of Q&As that profile two people with similar identities ― but who live in very different places. As part of HuffPost’s Listen To America tour, we’re exploring how people’s lived experiences overlap and diverge depending on their zip codes. What is the “American Experience?” It depends where you look.
People today are very aware of the challenges of raising a child with autism. But what we don’t always think about is what happens when that child reaches adulthood ― and the added obstacles and concerns that come with it. From job opportunities to housing to social interactions, there are many aspects to worry about. Elaine Hall and Sue Patton know this all too well.
Elaine lives in Los Angeles, California. She adopted her son Neal from an orphanage in Russia when he was 23 months old. He’s now 23 years old. Neal has severe autism, and although he is non-verbal, he’s found ways to communicate, learn and work as an adult ― thanks in part to local resources and a special theater-based program his mother developed.
Sue lives in a small town in Indiana called Pendleton. Her son Blair is 25 years old and also has autism. As a single mom, she’s struggled to pay for expensive therapies and has worked tirelessly to cultivate a more inclusive community for her son and other people like him.
Below, Elaine and Sue open up about their sons’ transitions from children with autism to adults with autism, the resources helping the young men live relatively independent lives and their fears ― and hopes ― for the future.
HuffPost: When and how was your son diagnosed with autism?
Sue Patton (Indiana): He was diagnosed when he was in kindergarten when he was about 6. We had some issues with him not knowing how to interact with other kids. One of the things that got it all brought to a head was because he wanted to kiss this little girl in kindergarten, and of course her mom threw a fit and wanted to sue the school.
The teachers were like, “Oh he’s got ADHD. Here’s a list of doctors. Go and get him some Ritalin and everything will be good.” Thank goodness I went and got a full evaluation, because it was more than just ADHD.
Back then in the late ’90s, there wasn’t that much known at that point about autism, especially if the child was higher functioning. He’s verbal. When they gave me the diagnosis I was like, all I know is the movie “Rain Man,” and he’s nothing like that. I had to start doing a lot of digging and research because there just wasn’t much out there at that time.
Elaine Hall (California): When we adopted Neal, we were told that there may be some catching up that he needed to do, from being in an orphanage for the first two years of his life. But when he was 2 years 10 months, a doctor said that he’s not catching up the way he needs to be, and suggested that we were going to be going on a different type of journey than we anticipated. He was shortly after diagnosed with autism.
This was 21 years ago, and there wasn’t as much written about autism as there is today. For me, they could’ve called him anything, and it wouldn’t’ve mattered. He was my son. Friends said that I should send him back to Russia, therapists looked at me with sadness and pain. I was told to put him in an institution and I was like, I just got him out of an institution, I’m not going to put him in an institution.
HuffPost: What challenges has your son faced and how do you try to address them?
Sue (Indiana): He didn’t really know how to say hello to people properly, so we used to practice him standing outside and knocking on the door and saying hello, or I would stand outside and knock on the door and have him open the door and say hello, just how to do some of those very basic things.
All the way through school and into adulthood, it was always a struggle with social skills, just not quite understanding situations, having trouble if he got off schedule. But we’ve done social skills classes and therapies.
Around fifth grade he was diagnosed with Tourette’s and bipolar disorder. We had to medicate him for both ― particularly for the Tourette’s because he had physical tics, where his eyes would roll and his neck would move and that would give him headaches. So we had to get that under control, just to help him feel OK. Usually most kids lose those tics when they’re in their late teens, and he did. So he’s no longer on medication.
Within the last couple of years, he started music therapy, and I’ve seen a huge improvement. Somebody comes to the house and works with him. It’s very hard to understand him when he talks sometimes. He will talk very rapidly, so she works on his rate of speech. They talk about music videos, and other age-appropriate things to help him learn how to talk to other people. She’s gotten him to slow down. He’ll tap on a drum while they talk, just to improve his rate of speech and that kind of thing. And she’s been teaching him how to play the guitar. That helps with some of his motor skills and patience and trying to work through things.
Again, he was diagnosed back in the 90s, so I didn’t know about therapies like that. I found out about this through the Medicaid waiver ― he’s gotten services through the waiver since he was 18. It was like getting a raise, because I didn’t have to pay. I work in credit card processing, and I’ve been very blessed to work from home for about 25 years. My boss has been very accepting.
But I’m a single mom, and all the social skills classes and therapies are expensive. It’s put me into a lot of debt. Now he gets therapies paid for through his Medicaid waiver.
He sees a behavioral therapist to work on social skills, and he’s done a lot of group activities with other young men who are on the spectrum or might have some sort of intellectual disability. They do a lot of outings and work on social skills and things like that.
Elaine (California): Before I adopted Neal, I was a Hollywood acting coach. After the adoption, I still maintained a practice of using movement and creativity with children and young adults. Even prior to his diagnosis, I always used creativity to connect with him.
After his diagnosis, I just started to use everything I knew in theater to connect with him. I basically joined his autistic world. If he would spin in circles, I’d spin with him. If he would stare at his hand, I would look at how marvelous the hand was. Traditional therapists in Los Angeles thought I was crazy, because I was enabling his autism.
Fortunately, I found experts in autism that were emerging, Dr. Stanley Greenspan and Dr. Barry Prizant, on the East Coast. I started learning from them. Dr. Greenspan became my son’s doctor. He had developed a whole relationship-based approach to autism, that was counter to the popular behavioral approach that was happening, and he encouraged me to keep doing what I was doing but with more of a knowledge base about autism.
I developed a method to join my son’s world, and then I basically trained all my theater and creative friends about autism and how to meet my son where he was, to bring him into our world. We did that 10 hours a day, seven days a week, for a year-and-a-half, until he started emerging into our world ― still with autism, still nonverbal, but communicative, happy, participatory.
My methods became the foundation of a program I developed called the Miracle Project, which uses theater and film to bring out the best in individuals with autism and all abilities. This program is now being sought all over the world. It’s about inclusion from within, and it all started from being in my playroom with my son.
The program emphasizes being in the moment, just as my son and my friends with autism are. It’s not about changing the individual with autism, it’s about showing us how we show up in that room, in the presence of someone with autism. So that inclusion starts within ourselves.
We take away judgment, we take away fear, we take away “they’re different than me,” but first by understanding ourselves and what our own limitations are. I never, ever use the words high-functioning and low-functioning. We just need different supports and different environments.
For example, I would be called high-functioning in a creative endeavor, and low-functioning in technology. My son, if you saw him in a classroom with 30 other kids, he might run around in circles and put his hands over his head, but if the same 30 kids were following him on a hike in the Santa Monica Mountains, they would say, “Oh, he’s high functioning, because he could lead the whole pack throughout the mountains.”
Another important component to it is understanding sensory needs. Often, people think it’s individuals with autism who have sensory needs but we all have sensory needs. I invite the coaches and train the coaches to be in tune to their own sensory system. We realize that the world really is too loud, chaotic. There’s so much going on. So-called normal people try to make sense of it. Where, my son and friends with autism, they recoil from it.
It was also about following Neal’s lead. This was the part that made a lot of professionals at the time think that I was crazy, because if he needed to stack cars one on top of another, I would have a coach sit right next to him and stack cars one on top of another, without judgment. Gradually over time, relationship became important, and they would start naturally playing cars together and building together and sharing together from an organic, natural place. It’s just really tuning in first to ourselves, and then into the person in front of us, and knowing that each person with autism is an individual.
He also had sensory integration therapy as a child, he had speech therapy, he had communication, which is assisted technology. Then the aspect of relationship-based intervention, which is really tuning in and joining his world.
Osteopathy has been really powerful with calming my son’s neuro system. Homeopathy. We did use pharmaceuticals for about two to three years until ... well puberty is a bitch. Physical activity is so important. Walking, swimming, moving, dance. We do a lot of dance, a lot of movement.
As an adult, he’s always changing. What’s constant is the relationship-based intervention, the inclusion from within. Our generation of parents, all we were hearing was that it’s about curing our children of autism. There were organizations about curing, curing, everything was about the cure. What I realized through this process was it wasn’t about curing my son’s autism, it was about curing my need for a so-called normal life. Once I was able to cure myself of that need, I could embrace autism, and I love autism.
HuffPost: What was your son’s school experience like?
Sue (Indiana): Blair attended public school. He was integrated and mainstreamed until about his freshman year in high school, but he always had a full-time aide with him. So he was in gen-ed classes, and then once he got into high school, I started pushing a little bit for him to do part of the day with the self-contained resource class, because I wanted to build independent learning skills as well as educational, with math and English and all of that, I wanted him to learn some independent living skills, because I realized at that point that him just having a high school education and degree wasn’t going to help him that much unless he had a lot of other skills to go with it.
So he did about 50-50 in high school. He didn’t pass all of the standardized testing, but with his grades and the classes he took, they approved a waiver for him to actually get a diploma.
Elaine (California): We homeschooled him. When it came time to ask what is he going to do when he grows up, we thought he was going to be a beekeeper. Neal can pick up a bee, bring it to his nose, and then let it fly away without it ever stinging him. That’s one of his favorite things to do. So we did a whole curriculum around bees. You can really teach everything around bees. We learned all about bees. We took him to a bee farm, where we found that what he loved more than the bee was the flowers. We learned that when you pick up a bee and you put it to your nose, he’s actually smelling, because bees smell differently based on the flowers that they’re pollinating.
That’s how we discovered that he wants to be an organic farmer. He loves working in the garden. That’s an intervention, is really tuning into their preferred interests, and taking those preferred interests and seeing how does that work, how does that evolve into work, into life.
HuffPost: What does your son do now?
Sue (Indiana): Even though he has problems with social skills, he is so outgoing. He loves to interact with people and that’s very important to him. We’ve been working on trying to get a meaningful job for him. He has several things that he does right now, but each of them are just three hours a week. I’d like to find him something where he could work 15 hours a week.
He works with our local library. They have a traveling food pantry that goes out with library books once a week, and so his job is to stock the food pantry, and he loves it because he likes working with everybody at the library. It’s a small, close-knit group of people and he feels like he’s part of that family, so he really likes to engage with people. He likes to be involved. But if he’s not doing that, he likes to sit there and play video games by himself.
He works at Anderson University with the groundskeeping crew, and his behavioral therapist got that arrangement going, so it’s just three hours a week, but it’s 45 to 50 minutes round-trip for me to take him, and then another 45 to 50 minutes to pick him up, round-trip. It’s a volunteer position ― it’s not paid.
Elaine (California): He wakes up every morning on his own, without an alarm, at 7:15. He’s organized. He’s calm. He’s, I would say overall, a very happy person. I’m with him for a couple of hours every morning. He still needs support with some things. He can dress himself, but he needs suggestions on making sure he brushes his teeth and brushes his hair and takes a shower and all of that. We have breakfast together, and then he goes to a day program that’s really phenomenal.
California has regional centers that receive state money and then certain programs are vendored by the regional centers. They’ve been vetted by the regional center to receive state funding. His day program is fully funded. We’re very blessed, hopefully life will stay this way. From 9 to 3, Monday through Friday, it’s covered, which is great. It’s called Creative Steps and is under the Aurelia Foundation.
It’s completely individualized based on his interests. Two days a week, he goes to work at Shemesh Organic Farm in Malibu. He was the first person with a disability that they brought on and hired. At first, he just went through a summer camp, Camp JCA Shalom, but they hired Neal to work in the garden year round, because he loves to work. He gets paid.
Now, there are 12 other young adults there, all because of how well Neal did. Creative Steps takes a whole group that goes to this garden twice a week.
He takes great pride in work. He does not tire easily. He loves the outdoors. That’s what he does two days a week. One day during the week, he works in a local grocery store. He turns the labels around, so they’re all facing front, which he loves to do because he really loves order. On Friday, he does educational field trips with his one-on-one support.
HuffPost: How would you describe your community and how people interact with your son?
Sue (Indiana): Pendleton is not a big place. We’re talking like 4,000 people. I grew up in Pendleton, and after going to college in Kentucky and having my sons there, we moved back to my hometown when my husband got laid off. That was 1994 before I knew we were going to have these issues with Blair.
Again, it’s a small town and everyone knows everyone. In high school, he joined Best Buddies and with my other son and me, all three of us are very involved. I’m on the advisory board for Best Buddies Indiana. It’s kind of my passion, and it helps keep me centered with all the other chaos. It’s wonderful to meet so many great people.
Best Buddies really gave Blair a lot of confidence in himself. It’s just made a huge difference in how the kids in the high schools interact with everybody. We really have pushed to promote Best Buddies and then inclusion throughout the whole town, and we’ve gotten a huge outpouring of support. We’ve got one little main street type thing, and the restaurants and everybody are really supportive. So a lot of times we’ll have parties at some of the different places, and it’s just like everybody is really accepting.
The bad thing is once these kids get out of high school, they transition out and are adults, and there aren’t really any programs for them to offer job opportunities or leadership roles. That said, being a single mom raising two kids, I imagine there are a lot of things out there in Indiana that I’m not even aware of and don’t even have the time to find out about. That’s been one of the hard things.
I’m focusing on making our town more inclusive. Hopefully there will be jobs not just for Blair but for others in our little tiny town that have disabilities.
I’m also in a philanthropic sorority called Tri Kappa. It’s a sorority of women in Indiana, and I’ve been very involved at not only my community level but also the state level. I tend to promote my agenda to those other women a lot, so when I start talking, I feel like some of them are probably rolling their eyes, “Oh there she goes again.” But I’m constantly looking for any kind of forum that I can to promote inclusion and it usually revolves around Best Buddies and that name.
Elaine (California): We’ve lived in West LA for many years. I think we’re really fortunate. A lot of the stores have known Neal since he was really young. He’s grown up with them. Sometimes, he’s the mayor of Los Angeles, of Santa Monica, because people wave to him.
He goes to Whole Foods, he does his own checkout with his debit card, and everybody’s patient. There are still people that give weird, dirty looks, and things like that, that does happen. But, I think we’re very fortunate to be in a place that’s pretty accepting. We’ve spent some time in other parts of Los Angeles and outside the city, and I think people are not as understanding. When we’re out there, we do get more weird looks. I think part of my mission is to help people of the world understand autism in a different way, so we’re not afraid of it.
I feel very lucky for our community. There are so many programs. I bring Neal and other groups of young adults to faith-based communities, and we help lead services. You have these non-verbal kids helping to lead high holiday services and synagogue Friday night services. We’re changing perspectives. It’s really easy to get into a natural environment, a peaceful environment ― the beach, the mountains.
Still, I’ve had people honk at us because he wouldn’t get on a school bus. People can be inpatient in LA, especially West LA, because everybody’s got somewhere to go. No one’s in the moment. And residential opportunities are clearly lacking, We parents have to now create places for our kids to live. And other opportunities.
HuffPost: What’s his social life like?
Sue (Indiana): He’s friends with a lot of the people in his group therapy programs. I’ve been very, I don’t want to say pushy, but since he got out of, transitioned out of high school, I found somebody who’s in Kiwanis and asked them to sponsor him, because you have to be sponsored to join Kiwanis. It’s a philanthropic group, so he goes to Kiwanis twice a month with somebody. I’m a firm believer in integrating into society, not just doing things with other people with disabilities. He’s the only one with a disability that I’m aware of in the group, and it’s a group of men and women who fundraise for scholarships for people. So I’m trying to teach him about volunteering. It also helps build friendships that way for him, outside of who I would be able to give him friendships with, so it’s been very, very good with that.
Elaine (California): On the weekends, he has a couple of friends, we also have a support staff that goes with him on weekends, different activities. Occasionally, he’ll sleep over with a couple other, or one other young adult. He’s really practicing being separate from us. He’s actually ready to be separate from us. That’s actually our goal this year, is to really help him with independent living with support.
We also know some college kids that hang with Neal, that are just great. As technology gets better, so does Neal’s ability to be in the world. He is a multimodality communicator. Thank you, Steve Jobs, because he uses his iPhone. We have an app called Proloquo2Go, which has icons, so he can order in a restaurant, he can ask for whatever he wants, what he needs, where he wants to go, by pushing on these icons, and then it talks out at you. He also uses sign language. He’s very expressive.
HuffPost: How did raising a child with autism affect your marriage?
Sue (Indiana): We got divorced when Blair was about 6, around when he got diagnosed. The diagnosis was really difficult. And I didn’t realize it at the time, but it turns out his dad was on the spectrum also, but much higher functioning. He’s always seen his dad every other weekend and still has contact with him.
Elaine (California): This journey definitely had some challenges on the marriage. I think I was pretty focused on Blair’s therapy. We divorced, and I’m now married to someone else.
HuffPost: What are your fears for your son’s future?
Sue (Indiana): I thought things would get easier after high school, and I was wrong, because now we don’t have homework, but now I’m facing the future. I know I’m not going to be around, and it worries me, to be honest. Right now, I know that eventually it would be great to get him in some sort of independent living arrangement, whether it’s an apartment with another person with a disability or a group home. I also know that we could use those kinds of services here in Pendleton.
My other son has gotten very involved with people with special needs. He’s a teaching assistant at the high school in the self-contained class, and after school he works with a little boy with Down syndrome, so he’s really supportive. We probably have to talk about what are we going to do in the future? What is he willing to do? I don’t want to burden him with everything, but at the same time, family to me is very important and I would hope that hopefully he’d be supportive and, I don’t know that they would want to live together or anything like that. In fact, they are typical brothers and fight a lot. But I also know he has a big heart and is not going to just walk away from everything either, so it definitely weighs on my mind a lot. I’ve got a lot of friends who are my age, and who also have kids with disabilities, and we get together every few months and it is a huge concern for all of us, now that our kids are getting older.
I think my biggest fear is ― is he well provided for when I’m gone? One of the things that I’ve had to start thinking about is the fact we live in a very small community and so, for him to have job opportunities, we have to go outside it. Indianapolis is too far to take him. We don’t have Uber. There’s no public transportation where I live, so I usually have to leave work, take him to whatever he’s doing, come back, work more, take off and go pick him up, that kind of thing. Now his brother is very helpful with that also. He does pick him up and do whatever he can when he’s off.
But that’s a huge concern, too. It makes it very difficult, living in a small town. I’m like, do I need to move closer to Indianapolis, where there’s public transportation and a lot more job opportunities and things like that? It definitely limits what he can do, but on the flip side of that, I have several friends with children with disabilities who do live in Indianapolis and the public transportation is horrendous for them. Some of the horror stories are just awful.
I keep trying to figure out if I could morph into doing something other than what I’m doing right now. What can I do to help be more inclusive, whether it’s transportation or providing job opportunities in this small town or to help put something in place, that hopefully would be sustainable for the future for them?
Elaine (California): I’m afraid that he’s vulnerable. When he has the proper support, he can do anything. My greatest concern is that I’m getting older. With the proper support, he lives a really great life. He’s learned to be an individual, he knows what he wants. He picked out a beautiful design for our bathroom, much better than I could. Without the proper support, without the strong coaches, he can get frustrated easily, and he can get sensorily overwhelmed, and he can get misunderstood. If people try to control him. He really knows who he is, and people look at him like he’s stupid or they don’t listen to him. If they don’t give him control, then he’ll act out.
HuffPost: What do you think your son wants others to know about him?
Sue (Indiana): I think he would want them to know that he’s a very fun guy. He likes to have fun and laugh and joke around, and that he has a lot to offer.
Elaine (California): That he’s smart, and that he’s funny. That’s very important to him.
I know it sounds really corny, but I find that my son is one of the most extraordinary human beings on the planet. He’s got a great sense of humor. He’s always the calm person in the room. He’s a peace lover.
I’m not going to be a Pollyanna, it’s not without challenges. He was the kid who threw temper tantrums for hours and hours at a time. He was a kid who never slept. Low tolerance to noise, low tolerance to stress. As we grow, challenges appear. It’s peaks and valleys.
HuffPost: What do you want people to know about adults with autism?
Sue (Indiana): I would like them to know that these people across the board, they need to look at them and see what their abilities are, not their disabilities. I know that’s kind of a cliché thing that’s being said right now, but it really is important to be able to look at somebody and be able to see beyond what their disability is.
They might be a wonderful musician or they might be a wonderful painter or artist, that they should never put them in a niche that they can’t do things, to try and find out what their true talents are and to be able to go with those and promote them and see them for who they truly are.
Elaine (California): That they have unique personalities. And it’s up to us to listen, be present, be curious, and allow them to shine.
HuffPost: What are your hopes for your son’s future?
Sue (Indiana): I would love for him to find a job that he loves and enjoys doing, for as many hours a week as he can. It might just be 15 to 20 hours a week, but whatever makes him happy. And that goes for his whole life. I would like to know when I am no longer around that I left him in a very happy, contented place, whether that involves work, marriage, whatever. I just want him to have as many opportunities as possible. I don’t want to pigeonhole him into something that I want. I want him to be happy and have the opportunities that he would like to have to do whatever he wants to do.
Elaine (California): His hopes are that he continues to inspire others, that he continues to live a happy life, that he gets the supports that he needs. I think the sky is the limit for him, and that he continues the life that he has now, which is full and rich and happy and supported. My hope is that he just continues on his path with the proper supports, so that he can lead ... I don’t want to say an independent life, but an interdependent life, full of all the possibilities that life and the world have to offer.
These interviews have been edited for length and clarity.
- This article originally appeared on HuffPost.