Here we address questions about Matthew that you may ask because you would like to get to know and be a friend of someone with ASD.
If Matthew is so severely affected by Autism that he can’t speak, should he be out on his own?
Could someone who starts out friendly betray the trust of a person with ASD? Abuse of a vulnerable person is always a danger in our societies. Matthew has some protection against being abused in his own perceptions of other people and in the loyalty of his dog. While Matthew finds it hard to read people’s facial expressions, he can sense the qualities of their characters. He would be unlikely to go off with someone he did not trust. His dog’s loyalty and uniform are another protection. It’s good that people in his neighbourhood and community know Matthew and his dog, are concerned for their well-being, and look out for them.
What is Matthew’s dog supposed to do for him?
Matthew’s dog is his great friend and companion, sensitive to his moods and needs, and closer to him for more of the time than any human being. He has natural qualities that have been well trained so he is aware of his master at all times. To reinforce this interdependency, Matthew cares for his dog—feeding him, letting him out into the garden, checking that his water bowl is always filled, preparing him for walks, grooming him, and expressing affection by patting.
His dog knows to follow Matthew and to stay with him at all times. When Matthew is stressed, he may lie under a weighted blanket with his dog lying on his feet and lower legs to ground him. When out walking, Matthew holds on to his dog’s leash. They look out for each other. The dog almost never barks--only when he perceives some change in routine or possible danger to Matthew. People in Matthew’s neighbourhood recognize him together with his dog and could raise an alert if man and dog became separated or seemed at risk.
Matthew calls his dog also his friendmaker-- and a bridge across the social gulf that separates Matthew from most other people. Given Matthew’s lack of ease in relating to new people, this is a huge role. It’s all right for his dog to be friendly with others, though it’s best if others ask Matthew for his permission to pat his dog.
If Matthew can’t speak, isn’t he in danger of being misunderstood by the police? What happens if he can’t give his name?
Matthew might be caught up in some mischief or even crime through no fault of his, just because he happened to be nearby. He could not speak his name if asked by the police and is therefore vulnerable. He might walk or even run away if accosted in a demanding tone. He does carry an ID card that he could present if given time. Being known in his community and the presence of his service dog could help.
Wouldn’t it be better for Matthew to be in a group of other people with Autism or disabilities?
There can be service efficiencies in grouping people with similar disabilities and having staff on hand to supervise them. Matthew prefers to be himself in his daily life. For one thing, he is very sensitive to sounds and needs calm quiet spaces in his life. He has a strong sense of his individuality and wants his own home and good life that is designed for his abilities and interests. He wants to make his own choices. He is a mentor for others who live with ASD and feels a close bond with his Bridges friends. Like all of us, people like Matthew can enjoy and benefit from different circles of friendship and relationships.
Why isn’t Matthew working at a job? People with disabilities should be doing some useful work.
Like most adults with Autism, Matthew does not have a regular paying job. There are various forms of work he has said he would like, in a library or providing a delivery service of flowers or prescriptions. He loves to garden and care for outdoor environments. Earlier in his life he worked at various menial tasks that have been devised for groups of people with limited abilities though the supply of work was often precarious and the experience was often boring or stressful.
Matthew volunteers in various ways, by copy-typing documents, collating mailouts and delivering public-interest flyers. He also contributes to society and his community of people with severe Autism by sharing his insights and experience in his books and poetry. He would like to increase his role as mentor for people who communicate differently and in training those who support adults with severe Autism.
Matthew welcomes the new opportunities that are being created for adults with ASD to use their “autism advantage” for paid work, such as those modelled on Specialisterne in Denmark to provide software testing, quality control and data entry services. Meticulon in Calgary recruits and trains people with “high-functioning” ASD and connects them with employers looking for hyper-focus and attention to detail.
There’s someone in my neighbourhood who may be autistic. I’m wary of greeting him when we pass on the street. How can I do better?
When you don’t know the person’s name, start by saying Hi, Hello or Good day and smiling broadly. Then please wait several seconds (mentally count to ten) and you will probably get a smiling response or a Hi sound or sign. Next time, you might add some comment about the day’s weather or a remark on what a fine dog he has (if he has one).
Once you get to know the person’s name, including that in the greeting would be great. If the person has a human companion, you might express your interest in a brief conversation. If there is a dog and you feel inclined, you could ask if it’s okay to pat the dog.
You may learn of a person’s great interests and share them in a friendly way. He may be keen on running or gardening or may deliver the community paper. Friendly greetings from several people met locally help to build a stronger sense of community.
You might be interested in becoming a closer friend on the basis of shared interests, after a process of getting to know one another.
Take your time, slow down, don’t rush the relationship!
Towards better lives and more secure futures
You might exclaim that life must be very hard for an adult who has severe symptoms of ASD. What is remarkable is how positively most think about their lives, especially if they have caring families and friends. Learning from experience, we propose this basic guide to a good life.
Start early and keep evolving these interrelated strategies, with and for each person. Independent Facilitation, a new service in many regions of Ontario, can help individuals and families to know about options and potential connections. Search online for a service near you.
1. Encourage self-expression and choices
- Start from earliest years with whatever ways work reliably, to communicate and be listened to, respected and understood.
- See the humanity, abilities and potential in each person, however severely challenged.
- “Listen” to understand each person’s point of view and priorities.
- Observe and record what strategies work best.
- Vulnerable adults need friends and allies in addition to family and paid workers. Friends get to know the person very well through shared interests and can support and continue the parents’ roles. Friends support one another in a circle or support network.
- A natural and informal circle of support can be the basis for legally incorporating an Aroha entity, with core members as directors who have legal powers to supplement the role of parents and eventually succeed them.
- Planning tools such as PATH (Planning Alternative Tomorrows with Hope), MAPS and CIRCLES, can help in working through transitions, envisioning a good life, and devising strategies to attain it.
- Such tools may be used by independent facilitators, a role that is now becoming more widely recognized.
- Two challenges are attending closely to the “voice” of the focus person and working out how to realize a plan.
- Don’t be limited by the traditional service system. Consider what’s really needed and find ways to make it happen. Understand the person’s highest priorities and general goals. But also be open to the unexpected opportunities, even serendipity.
- Good surprises include new abilities and interests and unique gifts, or the appearance of wonderful new friends. Worsening health challenges or the disappearance of trusted support people or friends are harder. All need flexible responses and accommodations.
- They need not be limited to paid work or group programs.
- They should include continued learning, healthful exercise and contributions to the community.
- Each person should have a way of life that is uniquely suited to needs and interests, and should be able to comment and make requests and suggestions.
- Support workers should be chosen by the focus person.
- Build components of a good life in stages that are right for the person. Try out various options, so person and all supporters have a basis for making choices. Build on transition supports that work.
- Strengthen Informal community supports that may be most lasting.
- People with complex needs may need completely individualized activities. Listen to what person says!
- People need choices. Someone with hypersensitivities may need his own home, supported in the ways he needs and shared with companions he chooses.
- Practice alternate living experiences centred around the person as a basis for real choice of kind of home and living companions.
- Don’t rush to buy a house or necessarily settle for some option based purely on what seems expedient for costs.
- Guelph Services for the Autistic (GSA) is dedicated to supporting individuals, with their families and friends, to develop and sustain good whole lives in homes of their own. GSA has pioneered an individualized model of home ownership that includes choice and self-direction by the person, long-term capital investment by the family, support circles (and Aroha entities), and recruitment and matching of lifesharers, supporters and volunteers. See Creating a Home and Good Life of My Own: the roles of a housing trust (Guelph, 2012).
- Think ahead about how a good whole life is to be co-ordinated and kept going.
- An innovative mechanism is the Aroha, an incorporated entity of personal empowerment and support that can give trusted friends of the person and parents the legal powers to strengthen and continue family efforts. An Aroha can own property, and receive and manage resources to match person’s needs and wishes. A good life can be grounded in friendships, shared activities and practice while the family is still around. GSA requires people and families wanting GSA support with its individualized model of home ownership to form an Aroha first.
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