In last month’s blog we met Emma* who has been using AAC and communicating with PECS since she was very young. Born with a physical condition that made verbal communication difficult, and on top of that being diagnosed with Autism and Epilepsy meant a tricky start in life. Whilst Emma now is able to use speech most of the time she reverts back to PECS regularly as she finds speech very difficult after she has had a seizure.
We recently interviewed Emma to find out what it is really like to communicate with PECS user. She takes us through the highs and lows of using AAC and what it is like using PECS in the community. She also has some great advice for those implementing PECS with their learner.
Transitioning from Child to Adult Services
Q: How did you find the transition from education to adult services?
A: For me the transition was really really good, I moved from home into supported living with some peers. From there I moved to another place where there were still staff but they were much more just in the background in case they were needed. I was independent, had my own bedroom, did my own cooking and so on. Now I live completely independently. I was really lucky the children’s disability team that I was under went up to the age of 25. I had the same social worker throughout who saw me through the end of school then college and onto work experience and independent living.
I managed to maintain all the resources that I had, so I kept all of my symbols, PECS books and visual timetables – they all came on that journey with me. I still have my blue PECS book and I am very protective of itI Now working in adult social care – in an administrative role – I see people come from residential schools or placements into adult supported living but any PECS books or iPads with apps belong to the school so they just turn up to us with nothing, no form of communication because it belongs to the school. So then we have to try and get funding to get PECS books, AAC or iPads, work out what type of symbols they use and then we have to rebuild their communication system from scratch. For service users it’s massively frustrating, people lose confidence and motivation and you end up having to go back to basics quite a lot of the time.
Q: You are over 25 now, do you find that services have really dropped off?
A: Yes they do, I think it depends which team you come under to certain extent and where you live as to what you can access.
Q: Do you consider yourself part of the autistic community?
A: No not really, I think I’ve always thought as everybody as one big community. I’ve been offered disability social clubs, autism groups and so on. I’ve got quite a mixture of friends some with disabilities and without, obviously working in adult social care I’ve also got colleagues and service users who are friends. My friendship group is a real mix. I’m all for people with disabilities supporting peers with disabilities and I think we can learn a lot from each other, it’s invaluable information that gets shared.
I saw something on social media the other week that said “autism training should be given by autistic individuals”, I actually disagree with that. Of course people with autism have a lot to contribute, but everybody’s experience is different. Professionals are really the only ones that can inform you about funding opportunities and the proper way to implement something. And they’re not clouded by personal feelings. For example if I saw somebody putting a PECS book out of reach of a PECS user I would come down on really hard on that person because I know what that feels like, I understand the frustration. However, there could well be a reason for taking it away if perhaps someone was using it to self-harm, we’ve had people injuring themselves on purpose with sharp corners so we had to introduce a cloth PECS book.
Moving into the World of Work
A: Public perception – a lot of people think that communication difficulty equals learning disability and I know that it is very common but people automatically go to a ”you can’t consent because you don’t speak” but actually I have full capacity. You just need to be able to present the information to me in an accessible format, just as you would do for somebody who is deaf or blind. There is something to do with communication issues that automatically makes people think that you don’t have capacity to make decisions for yourself. I don’t know if you remember back at the beginning of Covid there were stories of DNR’s (do not resuscitate order) placed on individuals with learning difficulties, I don’t have a learning difficulty myself but with a communication problem I wondered if they would put a DNR on me. I wrote a long statement and taped on the inside of my front door just in case. People see communication disorder or learning disability and write people off as been unable to give consent.
I chose to work in the industry I’m working in because I think that people wouldn’t overestimate or underestimate what I was capable of. I think it would be entirely different if I was to work in a café, be a chef or an air hostess for example. I don’t think allowances and adjustments would have been made for me like they have been in the care sector.
I work for the provider that used to provide me with services. When I no longer needed their help they offered me a job! I am their communication specialist, I mean I don’t have any formal qualifications but I am a Makaton tutor and teach their autism awareness course.
Looking Forward
Q: What are you plans for the future, do you have any ambitions that you are desperate to achieve?
A: I really believe, as I’m sure you do too, that everybody deserves to have a voice. There are many issues within health and social care that stop this happening and I’d just really like to fix it all. So many adults in social care can’t answer questions like who, what, where, when & why. The service users go to day centres and places like that where the staff read about them rather than gather that information from the individual – what is it that they like to do, what do they like/don’t like etc. Service users don’t get the opportunity to practice those who, what, where, when & why questions. And then when you need them to answer them, because of safeguarding for example, they can’t.
For community access it would be great if restaurants had menus with PECS symbols on, or the cinema had a price list with symbols of popcorn and a price as well as list of words. Just so people can have independence, because with independence comes privacy and dignity. But without the whole community engaging in that you can’t give the person what they deserve. It needs to be a whole community approach can’t just be the school, the family and social care settings. Supermarkets need to get on it, I see that ASDA do that now but they all need to.
You need to be able to take your PECS book to the side of the swimming pool and not be told to put it away because it’s a trip hazard. There needs to be some understanding, some thought about perhaps putting on a chair so it sits above the floor and isn’t a trip hazard to anybody. An understanding that this is my voice and I need it close to me.
Q: Our office in Japan told us that quite a few restaurants now have symbols on their menus and they advertise this in the window so potential customers know that they have the option.
A: That’s amazing! We have adults that come to us whose first language isn’t English so to communicate with their peers who might have speech and communication difficulties plus they have speech communication difficulties themselves using PECS is brilliant because you can put the English at the top of the picture and the other language at the bottom of the picture to enable peer communication.
What a Difference a Dog Makes!
A: I like horse riding, drawing and painting and I love computer games. I also like walking my dog, he is my first assistance dog. He has really changed my life, having him with his assistance dog vest on makes people see that invisible disability. If I have him with me people are a lot more receptive to AAC use. He seems to make everything much more accessible; it is almost like he is a universal sign to everybody! Obviously, he is not a guide dog but he seems to have the same effect on everybody. I find that when he is with me the public give me space and time to do things, which I don’t get if I were out without him and using PECS or some other sort of AAC. Quite often people in shops and things seem pushed for time, but if I have him with me they act totally differently.
Advice for PECS Implementers
Q: What advice would you give to parents of potential PECS users or teachers who are considering using PECS but are hesitant to start?
A: Go for it, what have you got to lose?
Q: Is there anything that you think that those implementing PECS should know?
A: Yes, they should have to try it for a day themselves first. When I first started my job my boss decided it would be a really good idea for everybody to see what it was like to have to communicate for a full day with no speech. It was a surprise for everybody, they turned up at work and found that from 8:30 AM to 5 PM that day they weren’t allowed to speak. Everybody was given a set of symbols on their desk for them to use. They also had paper-and-pencil so could write things down. The feedback from the day was two things. Firstly that people gave up and walked away from situations because it was just too difficult to communicate what it was they wanted to say. Secondly, my colleagues were exhausted! They found the whole thing really tiring. They now realise that I get tired and that there are still numerous occasions where I can’t be understood. It was pretty cool though to go from the worst communicator in the office to the best communicator overnight!
Even as I approach the age of 40, people still ask the person I’m with what it is that I want! Even when I can’t speak after a seizure all you have to do is look at me with your eyes, I can still communicate with you, I just can’t do verbally.
Also don’t do PECS part-time! I’m at the age now where lots of my friends have had children and I see them doing things like potty training. Now you wouldn’t say to yourself I’m only going to potty train between 11 and 12 today – you’d have a right old mess on your hands! So why would you implement PECS part-time?! You might not create a physical mess, you could be creating a mental mess inside that person’s head. You need to put the effort in it’s like anything in life if you put the effort in you will get the results. Get prepared, have the training that you need and gather the resources you need. It isn’t something to dabble in for a few minutes and decide it isn’t for you, you’ve got to throw yourself into it. Anyone planning on using PECS needs to know three things. One that it’s absolutely brilliant, two that you’ve got to put the effort in. Put the effort in and you get the results and three go in with everything you that you need. The more you do, the more independent communication you’ll see and the further you will see that person going.
Q: As a PECS user what you think is the main advantage of PECS? Does it have advantages over other AAC systems, would you recommend it?
A: Yes there are hundreds of benefits, it doesn’t have batteries and doesn’t die! It’s waterproof, you can take it to the beach and the swimming pool. I like the permanence of symbols – you say a word but the minute you said it it’s gone, when you sign the minute you sign it’s gone but a symbol has permanence it can stay there. I love how you can create new things from putting symbols together. I love how universal it is. I could take my PECS book to the fish and chip shop down the road where they have probably never seen PECS before. I can give them a sentence strip with “I want fish chips” and they know exactly what I want. Yet, if I went there and signed to them they more than likely wouldn’t understand it.
Q: If you are the parent of a child who just received a diagnosis and wanted help where would you go?
A: This day and age the Internet! You need to use reputable sources, speak to your local speech and language therapist. There’s loads of videos on you tube showing you how to use symbols but not all of them are brilliant some of them are really lovely enthusiastic people who are sharing their experiences but they’re not always right!
We really can’t thank Emma enough for agreeing to this interview. What a great insight she gave us into the life of a PECS user.
*name has been changed to protect their identity
By Louise Hotchkiss
© Pyramid Educational Consultants