PECS founders Andy Bondy & Lori Frost tell all

You may know everything about PECS, but what about the people behind it? For our blog this month, we took the opportunity to talk to PECS founders Andy Bondy and Lori Frost. From the very humble beginnings of the AAC, why they love Japan so much to how they have coped with the pandemic. It’s a fairly long read, so you may want to grab a cup of tea and a biscuit before you begin. Enjoy!

How are you?

Andy: Good!
Lori: Good- this is the longest stretch in 30 years that we’ve been home and haven’t travelled!
Andy: Two or three years ago, I was away from home for around 100 days a year.
Lori: And most of that’s out of the country.
Andy: Every time we get new passports, we have to send them back in so extra pages are added.

What’s the best place you’ve been able to visit for work?

Andy: We always love going to Japan and Israel- they’re really high on our list. Israel is somewhat because I have family there and Japan because the people are incredibly nice and take care of us.
Lori: People are nice everywhere, but the culture in Japan is so different from what we’re used to- it’s so intriguing and comforting once you understand the culture. 

What has helped you to cope with the stress of the pandemic?

Lori: Zoom! We keep in touch with our four kids, grandkids, our siblings, my parents, friends and I also live with my best friend- that’s a big part of it.
Andy: We can be locked in the house together for weeks on end and it’s fine! We changed some of our routines- I used to go to the gym first thing in the morning, so I’ve started to walk around and then the golf courses were finally opened, so now I get up and walk around nine holes, just to do something different than walk around the neighbourhood. I’ve had to figure out other ways of keeping myself moving- it’s so important.

What first got you interested in working in the field of communication, and more specifically, working with people who have special/additional needs?

Lori: When I was doing my undergraduate degree in speech therapy, the university had a clinic where students were learning how to do speech therapy and one of my first assignments was a little boy with autism. I was fascinated- that’s what hooked me from the first year.
Andy: For me… 1969, I was working in a camp in New York and I worked with a child who was ‘emotionally disturbed’ and I just found him fascinating. 

Did you have any career near-misses?

Lori: Yep, I always wanted to work with animals!
Andy: I switched from a physics major to psychology! I went to graduate school and became immersed in it- it was all really, really interesting. After that, my first job was in a university, close to where we live now. I worked there for seven years and then I got a job at the Delaware Autism Programme… that’s what brought me really into focusing on autism.
Lori: He was a school psychologist!
Andy: After about a year-and-a-half, I became the acting director and stayed working there for around twelve more years. That’s where Lori and I met.

Who do you think is the most underrated psychologist and why?

Andy: I find Skinner, if you will, is the most misunderstood because people either really appreciate him and the field of behaviour analysis or people outside dislike him, hate him or don’t understand him. I’ve always felt like part of my mission is to bring his way of thinking about things to everyone. Can a speech pathologist become a better speech pathologist if they understand Skinner? Can a parent be a better parent? Pretty much my entire career is trying to make Skinner more accessible. 

Did you have any mentors or people who you were inspired by?

Andy: I was lucky with the graduate programme I went to in North Carolina- we were like the guinea pig class to become clinical psychologists, but since it wasn’t approved yet, you had to get a degree in experimental psychology as well as fulfil all of the requirements for clinical psychology! I was fortunate to be around two people in the experimental field – Aaron Brownstein and Rick Schull – they taught me how to think critically, analyse deeply. The experimental people thought more deeply-  how do you teach a pigeon to do something? How do you figure out what a pigeon ‘knows’? Not that I think of children or kids as pigeons, but I can’t get into their heads any more than I can with a pigeon’s head! It just gives you a different way of looking at things that I found really helpful.  I think what we do at Pyramid is work really hard to get people who are not behaviour analysts to understand the principles of why ABA is so important. And for me, I think it all started with interacting with those people in grad school.
Lori: I’d have to say one of my earliest idols and mentors was Andy! When I met him, I had worked in other school settings in different states- but I’d never worked with someone who made me think, who made me question and who had a daily, weekly, lifelong commitment to learning and teaching the people around him.
Andy: The first director of the Delaware Autism Programme hired Lori-
Lori: -it was totally serendipitous, how we met. My first husband, our son and I had just moved into this town in Delaware- the day we were moving in, the neighbour from across the street came over to introduce herself and asked ‘what do you do?’. I said ‘I’m a speech pathologist’ and she said ‘we’re looking for one in our programme!’. So, I applied for the job and that’s what started it all!
I always talk to people about how I had been a ‘traditional’ speech pathologist- I always wanted to work in schools and that’s where I’ve always worked. But I was the kind of speech therapist who would go and get the kids from the classroom, take them down into my therapy room and do my magic, then send them back to the classroom and never talk to anybody about this child. When I went to work in the autism programme, speech therapists were in the classroom working with the teachers, which was a totally different experience that gave me a very different perspective on my little, isolated therapy room.
Andy: We had no therapy rooms. Even when the state gave us money to build a new facility, we still said we weren’t building any ‘speech rooms’.
Lori: It’s still a controversial service model in the US. The model imposed on speech therapists is taking kids down the hall for twenty minutes, as opposed to going into classrooms where the kids are spending eight hours a day. And it takes creative bosses and directors to change it!
Andy: You have to really educate the parents on what is best for their kid. I mean, it’s natural to think ‘I want the speech pathologist to spend thirty minutes with my child’-
Lori: -five days a week.
Andy: What you want to say is ‘actually, what you want is that person to be there for thirty hours per week’. You want thirty hours of communication time, not the thirty minutes of specialised, one-on-one time. Trying to talk to the parents about why that service model got the kids more… the speech pathologist realised that they had everyone doing PACS (Phonological Assessment of Child’s Speech), as opposed to two PACS during the thirty minutes you’re with the child one-on-one. Obviously, that’s what parents wanted. We had to re-educate speech pathologists and get the parents to back us so administrators from the school district would understand what we were trying to do.
Lori: And in the US, certain children qualify for government funding for related services and the school can get reimbursed for that. Schools can get reimbursed for services such as occupational, physical or speech therapy, but only if it’s provided in the traditional one-to-one model. So, to be reimbursed as a speech therapist, you’d have to take the kid to your therapy room for thirty minutes.
Andy: At the program, there was no ‘downtime’- lunch and gym lessons were just a different opportunity to teach kids… We had parents who moved into Delaware and would call us up saying ‘well, you’ve got to give us a one-on-one programme at home for my child’. I wouldn’t even argue on the phone, I’d just say ‘when you show up, we’ll show you what we’re doing’. Parents would come into the school and see kids who were learning and happy- we never had a parent who, once they saw what we were doing and looked at the outcome we had, still wanted one-on-one. We even had parents who moved to Delaware just so they could get their kids into the programme. 

Why do you think PECS is so widely used around the world? Did you ever imagine it would get this popular or did you think the protocol would be a short-term solution used only in the autism program in Delaware?

Andy: The company started because I stayed in Delaware and Lori started working elsewhere. So, we began to do some workshops.
Lori: In the first few years, neither of us had a day off. I was still working at the school when we started Pyramid- I’d drive all over north-east Connecticut, New York and Pennsylvania, doing consultations and then fly out to San Francisco to present a workshop. Then I’d fly back to go to my school job! We never had a day off- for several years. Our kids have reminded us of that!
Andy: People started learning about the program from conference presentations. We didn’t have any data, but we had videos- people could see how quickly some of the kids could start to do the initial exchange. It wasn’t a serious, long process- it was ‘here’s ten trials and boom, here’s a child doing something and now walking over and interacting with people’. Because of these conference presentations, we had to organise how to successfully describe things and that’s really how the PECS training manual was developed. We had some people in Delaware, who were willing to step out of their secure jobs and work with us. We had to figure out how to start a company- psychologists, speech pathologists… What do we know about business, accounting and taxes?
Lori: ‘What do you mean we have to pay taxes?!’
Andy: Since we were so focused on the clinical side of things, we knew we had to develop a business model that we could trust other people to develop. Then we met Sue Baker, who founded PECS UK. She was really scared about the first conference- she had a room booked for 40 people, and it filled up in a flash! It wasn’t our plan to start doing workshops in the UK, but Sue realised that people really wanted to learn. In 1987, we were doing a talk in Philadelphia where there were more people on our panel than in the audience! Liliana Mayo, who had just started a program in Lima, Peru came up to us and said ‘you have to come to Peru!’ Around two years later, we did.
Lori: It was my first trip out of the United States.
Andy: We arrived in Lima- it was really interesting, the staff were very passionate and supportive of the kids. We saw that they were struggling to implement PECS with a girl, so we asked if we could help. They turned to me and said ‘but you don’t speak Spanish’ I said ‘well she doesn’t either!’
Lori: It was people like Liliana, and later Sue Baker, who talked us into spreading PECS. Peru was a life-altering experience; going to this school where parents spent two hours on a bus getting their child to school in the morning, to see the staff who weren’t being paid enough money to live on but continued to dedicate their lives to the kids… it was also where my passion for looking at teaching vocational skills to kids began. 

What do you think is the most misunderstood aspect of autism?

Lori: In my small world of speech pathology, one of the most misunderstood aspects is that these kids don’t have potential. Our goal with Pyramid is independence: we always have to assume it’s a possibility- a lot of people don’t assume that.
Andy: Somebody, even a professional, will meet one or two kids- and they become all of the kids. You have individuals who speak, go to university, get married, have children- you also have individuals who never develop speech and have severe cognitive difficulties; they both have autism. It’s impossible to have a singular view of what autism ‘is’ and people wrongly base their perception of autism on the very small sample they see. 

What’s something that you’ve learned from people with autism?

Lori: Patience. I think it’s even influenced my sense of humour and helped me to realise that the behaviours I have that other people think are ‘weird’ are what makes me, me- and that’s okay!
Andy: A deeper appreciation of the phrase ‘I don’t know’. Since 1969, we’ve been trying to figure out what’s going on and the answer is ‘I don’t know’. Be humble, keep asking questions, listen intently and, at the end of the day, have an acceptance that ‘I don’t know how that person sees the world because it’s not the way I see it’. 

What do you love about this industry?

Lori: I love all of the young people we meet- so many different perspectives and so many kind hearts! Families are also a huge part of the industry- I have so much compassion for them, especially during the pandemic. When I see a family stressed or struggling and realise maybe I can help a bit, it’s very rewarding. I’ve learnt so much from working with and watching the families of our kids.
Andy: The passion of the people we work with. When we’re in the middle of a 30 hour trip, we’re going not because someone will pay us for it, but for the people who will be there on the other end, and that’s why we founded the company. I think PECS works because pictures are understood by kids with autism in Japan, England, Delaware… and when people see a child learning PECS so quickly, you can really see a subtle shift in their orientation- people think ‘if they can learn this, they can learn other things too’. 

What frustrates you about this industry?

Andy: When I first started, no one got into this industry because of money- you were a fool for thinking that you were going to make a living, now that’s dramatically shifted. My view is that now, there is too much money- so people make decisions about making money. There are people that buy up autism companies because they can see the money, the insurance… I don’t see that as an improvement in this field. Another frustration is how we demonstrated that a public school program can provide a service as high quality as that of a private school when you focus on staff training and development- but there’s no money in public schools… it really frustrates me!
Lori: I feel frustrated when I work with staff who want to learn but aren’t given the time to learn. As a speech pathologist, I had to see children all day long. At the end of the day, you go home- there’s no time between that for development or even a simple group conversation with other professionals.
Andy: Setting aside training time for school staff is an ongoing issue.

Is there a common goal you believe people in the industry should be working towards?

Lori: The common denominator is communication; everyone should be addressing communication for these kids. Whether you’re a PE teacher, an occupational therapist, a mum, a speech pathologist… our common goal is to teach communication, because that’s how kids will become independent.
Andy: Everything we are doing is to help kids integrate into society as an adult, which means getting a job, living somewhere and being reasonably happy. School isn’t just getting kids out of the house so parents can go to work, there’s a societal goal, which is why we’ve spent so much time asking ‘what is functional communication?’ and ‘what are we trying to achieve?’- we have to get parents involved in these conversations. 

What advice would you give to those interested in working in the field, either as an educator, speech-language therapist or as an educational psychologist?

Lori: Go find someone who’s doing what you want to do and watch: if you want to be a teacher, spend a week in a school and see what happens. If you want to be a speech therapist, find a speech therapist who will let you tag along for a couple of days and experience what the job is like. I wish I’d had that opportunity earlier on in my work.
Andy: I think young people should sample and look into things. It’s kind of like buying a hat- some fit, some don’t. I’m not mad at the ones that don’t fit, but I’d like to spend more time on the ones that do! Trainers should also make young professionals aware that not everything is a deep, intellectual decision: there’s a lot of emotional stuff going on too, that we should acknowledge and be aware of. 

What advice would you give to a parent of a child who has recently been diagnosed with speech delay or communication difficulties?

Lori: For many parents, the first person they’ll go to if they’re concerned is the family doctor, and I hope that the doctor knows enough to send them to an expert. I find the internet to be an equalizer, parents have access to both good and bad information and having to sort between the two is very difficult; I would caution parents to look at what they’re reading on the internet with scepticism as it’s hard to know what information is good and trustworthy and what should be avoided. For speech and language delays, communication difficulties or an autism diagnosis, the Royal College of Speech and Language Therapists and the American Speech, Language and Hearing Association have good websites where parents can find basic, reliable information. Also, talk to other parents!
Andy: I think one of the toughest messages to get across is ‘don’t wait’. Don’t just focus on speech, focus on functional communication. One of the things I give Lori huge credit for is being a very brave speech pathologist: years ago, kids came to the Delaware program with no functional communication skills. We did PECS- of course we did everything we could to get speech going, but it’s not an either/or issue, these kids need to be able to communicate. Do we want kids to develop speech? Of course! But we shouldn’t wait for them to fail a certain amount of times at developing speech before trying PECS. Lori taught many speech pathologists not to wait before they get to work. We had kids that weren’t exposed to PECS for a month before it was obvious they were talking and we could do stuff with speech- other kids never acquired speech, yet they required functional communication skills. Parents are naturally going to resist this idea, and often think it’s a choice between pictures or speech when you can run them parallel to each other. That’s the biggest conversation to have- we understand your fears, of course we do. But we’ve looked into this for a long, long time.

What can we/the public do to help make the world more accessible to those who have communication difficulties?

Lori: Any picture-based alternative communicative system (AAC), whether it be PECS or a speech generating device, will take longer than talking which is why I always remind people that patience is incredibly important. Talking is the fastest method of communication- when it comes down to manipulating pictures, there can sometimes be a lack of patience in waiting for the message. 
Andy: I think societal acceptance follows exposure- there was a show in the US called Speechless that featured a mother whose son used an eye-guided device picture-based communication system. Shows like that are really important in making people realise that people with communication or speech difficulties make up a significant portion of society and that it’s normal. 
Lori: One of the blessings of travelling so much and teaching PECS all over the world is how it has allowed us to see cultural variations- firstly in the acceptance of disabilities, but more specifically the acceptance of picture-based communication, including PECS. There is a huge public effort in Japan to normalise the use of PECS- there are restaurants with PECS menus and some even have signs in the window saying ‘we speak PECS’. That kind of normalisation of alternative forms of communication is really important. 
Andy: We used to do a lot of outreach programs with the Delaware community; now, there’s more emphasis on how we can educate people like first responders and police who will encounter individuals with communication challenges so they’re quicker to accept these variations. Right now, variations, such as difficulties in communication, can feel threatening to a lot of people. There are horror stories we hear of when people misunderstand what’s going on, and the only way to counter that is to improve societal perspective on these issues.

By Lucy Hotchkiss

© Pyramid Educational Consultants UK Ltd, 2020