Ontario Adult Autism Research and Support Network - OAARSN

Bridges Communication Support Group

A creative communication group was started in 2004 by six Ontario men who live with quite severe challenges of Autism. As they do not speak reliably with their voices, others might assume that they have nothing to say—even that they do not think or feel. But they are very expressive, on many topics, supported by AAC technologies (augmentative and alternative communication). The idea of meeting regularly began with one of the men, who also proposes agenda topics and acts as host. Others have joined including three young women. Family members and friends encourage them in practical ways–and listen! Bridges members usually gather in Guelph from all over southern Ontario, and there are corresponding members in faraway places too.

The pioneers shared a dream of Bridges-Over-Barriers (Bridges for short) as “a centre for friends and family who live with the challenges of Autism to come together to share support, ideas and community. Bridges is the beginning of an idea for us to build on a small community of adults with Autism who have been meeting a few times a year since January 2004. We have been developing our skills as communicators and sharing technology ideas and friendship. We want to extend this community of pioneers. We would like there to be more opportunities for others to benefit from our experience, and to encourage and train more supporters to help people with communication and movement differences.”

In December 2005 the Bridges founder formally asked the GSA Board to shelter the Bridges group, receiving and managing funds from donations and possible grants and including Bridges events in its liability insurance. The GSA Directors readily agreed, very pleased at the initiative and how well the Bridges values of “Nothing about me without me” and “Though I may not speak with my voice, I have plenty to say” matched supported decision-making as a key element of the GSA model of creative support. Friends and well-wishers have been generous so that GSA and Bridges have been able to help more people who use Supported Typing and other forms of AAC to express thoughts and dreams.

Specific projects include training and practice for communicators and facilitators, video and print guides, a Facebook group, a blog by the Bridges host, and ways to enhance communication among the group in both real and virtual gatherings. Click here to see the Bridges newsletters to 2014. Members of Bridges are encouraged to express their thoughts, senses and feelings in other ways. They appreciate art, music and dance. Two have published their life stories and more are in preparation. Several are poets. Most have found a talent for art. We thank the Eden Mills Arts Festival for including the “Bridges Art Collaborative” in the festival from 2017.

In 2010, Bridges published its first film In Our Own Words accompanying a book of 112 pages with the same name. Bridges-Over-Barriers, In Our Own Words – YouTube The book’s chapter titles give an idea of the scope of our interests:

• Our community of communicators
• Recognizing our needs to express ourselves and our rights to be heard
• What it’s like to live with Autism: understanding our movement differences
• Let’s talk about our senses
• Sharing struggles and strategies to improve our lives
• The Bridges dream: sustaining our hopes.

The Bridges group and production of In Our Own Words also inspired the making of a short dramatic film Holding in the Storm (dvd and 40-page booklet) in 2014. Holding in the Storm Short Film – YouTube

Why/for whom are we making the Bridges movie and book?

– Everyone should know that our lives and thoughts are like normal people’s in essentials.

– People who don’t think we have thoughts of our own, who don’t believe in us, to prove we can talk and that we are smart.

– Skeptical and negative thinkers who work with autistic people.

– People who want to learn to use S-T with us, new supporters as well as our parents.

– Our support circles, so they renew their faith in us and try harder to help us improve our lives.

– Bridges members who live far away to help them make new friends.

– We are affected by Autism and we need support to talk and to live our everyday life. We want to show people who don’t understand that we can talk by typing and listening to each other, and that we are smart. People should know that we are doing the talking–not with our voices but with Supported Typing.

– We have thoughts of our own. I am a good man, smart and can communicate well. I am strong at listening, understanding and being myself. I can do things. I do not like to be talked down to.

– People should know how hard we have to struggle to behave appropriately, as well as about our joy in communicating with others. The world should wake up and accept us as we are. We want to be recognized as intelligent, sensitive and spiritual people who love God and others. We want to be accepted in a faith community where we can be involved and needed. People with Autism and disabilities are more in tune with spiritual things because their world is silent and their hearts are open. We need to be allowed to make our own choices and to try new things. People need lifelong education and recreational opportunities.

Record of discussion by Bridges members, printed in Bridges-Over-Barriers: In Our Own Words (2010), p.102.

Clearly, Bridges means a great deal to its members who have reflected:

“I think that being able to talk to others who use ST helps me talk more about how I feel about myself. I need to talk about this with people who understand why ST is important to each of us and how we need to mentor and encourage each other to keep trying new things even when it’s uncomfortable.”

“I feel like my Bridges friends are my family too. It is important to feel like I belong to something and someone. I always learn something interesting from the meetings. I think that everyone tries very hard to be caring and respectful of each other–that is what friends do right.”

“I can express how I feel and it’s okay. I am full of ideas that people want to hear about and I feel good about this. Now I am understood, not misunderstood, and people ask me what I need, not guess. I feel I belong now. When I didn’t use ST I was misunderstood.”

“I think that through Bridges ST has gotten the attention of others and they are listening and understanding me better because I am not the only person who uses ST. I am one of many smart, intelligent, interesting people who are sharing their ideas and life with others. It is important that friends, supporters and allies keep listening and asking so they can understand.”

Friends and family members who have been privileged to observe Bridges conversations have learned so much. They are amazed by the fluency and insight of the communicators and their patience, empathy and generosity of spirit. As a result of their conversations, various Bridges members have taken the initiative to improve their lives.

Some Questions Discussed by Bridges members from 2004-2009

What strengths can I bring to a community of friends?
How do we find good friends?
Who are our friends?
What qualities do I want in a friend?
Do we need different types of friends?
How have I made friends in the past?
Where might I look for new friends?
How do you tell people you want to be friends?

What is it like, not being able to rely on our voices?
What about when we know what to do, but can’t get our body and muscles to co-operate?
How do we get people’s attention to help us when we are stuck?
What helps us to move when we feel stuck?
Does everyone have times of being “hyper”, restless, always in motion, unable to stop our movements?
What is the connection between being unable to move our bodies sometimes and not being able to speak with our voices?
How can other people recognize our difficulties and provide the assistance we need?
What happens if someone tried to stop us when we are hyper?

We are hypersensitive to touch—how is this important in knowing how to support us?
How are we aware of other people?
Why do we feel everything so intensely?
How do sounds, rhythm and music affect our ability to express ourselves?

Why do other people not realize we are smart?
What makes my life worthwhile?
What does security mean?
What do I need in my life to feel a sense of security?
What are the qualities of families that make us feel secure?

How does communication figure in my sense of security?
What difference does Supported Typing make?

How to have more choice and control in directing our own lives?
What things do I want people to know so they can support me well?
How well I am included in making life plans?
How can we cope when familiar friends and support workers leave us?
How could direct Individualized Funding help me?

The Bridges experience also teaches us the vital importance of deep listening. Bridges members together composed this definition of the meanings of hearing, listening and paying attention for themselves. Their words have meaning for all of us who would be their friends and supporters:
– Hearing is with your ears only, but you may not understand.
– Listening is with your heart and taking in the meaning.
– Paying attention is using your mind to focus on the person who is talking…

The Bridges experience also provides lessons for how adults with severe Autism can effectively be helped to share their thoughts with people who may be able to help them realize their goals. We need to make accommodations and adapt environments and meeting formats to help communicators express their real and full intentions. People with complex movement disorders and sensitivities to all stimuli, and who have to tap out their words slowly letter by letter, need everyone present to be quiet, patient and supportive. Large gatherings with lots of social chatter may be overwhelming. They do not like to be taken by surprise and certainly not to be put on the spot by requests for simple “Yes or No” answers.

Our way of communicating may be criticized, even disbelieved, by people who have not tried to understand our struggles and strategies. In 2019 as founder of Bridges and supported by two of his communication facilitators, Andrew made a new film to address their doubts and questions: Its My Voice, Believe Me! – YouTube He also drew attention to the value of “Clean Language” questions in validating the reliability of what he types.

In August 2019, we offered Communication Matters!–three days of linked events including theory and practice, technique and meaning, including:
– Individual assessments of three young adults who have had little or no experience of Supported Typing;
– In-depth training in best practice by four Bridges members towards lessening the amount of physical support;
– A Bridges gathering on the Wednesday around one of our traditional Bridges lunches;
– An afternoon forum of my close friends who are members of my Aroha to consider strategies for ensuring that my communication is respected and believed by people in authority;
– Two evening discussions to which friends and allies were invited, to address questions of the validity of Supported Typing aka Facilitated Communication and what we could do to show that this mode of communication is real for at least some people.

Two ideas were threaded through several sessions. Click for a fuller account: Communication-matters-aug2019.pdf
—One was to try our best in our communication skills so we could gradually lessen our physical dependence on our facilitators. We talked about this in the evening discussions and Tuesday afternoon forum and practiced it Tuesday morning and all of Wednesday.
—The other idea was to make it possible for each communicator who wishes to earn Communication Credentials. These are documents based on a dossier or portfolio with evidence of competence in various skills, showing that we understand our options and can reliably express our wishes and priorities. I want to do this and I know some other Bridges members do as well. We still have to work out how exactly to do it.

Bridges has a wonderful agenda for developing and using our communication skills! But it has to be on hold for the duration of the pandemic that affects nonspeaking people with complex needs in some additional ways. We miss the precious gatherings in person where we shared our struggles and strategies. We need our facilitators to be close and able to touch to stabilize and encourage us. Some of us have nobody who is allowed even to visit us in our group homes. For the fortunate few of us who have a facilitator, we have been able to connect for virtual conversations using Zoom.

Click here to view past issues of the Bridges Over Barriers newsletter.

To communicate with Bridges please send a message first to info-bridges@oaarsn.ca. Guelph Services for the Autistic accepts donations in trust for Bridges and issues official receipts.