Supporting Adults with Autism Spectrum Disorder
Date of Conference:
Facilitator: Dr John Lord
Number Attending: 71
Venue: Italian Canadian Club,
Sponsored by Autism Society Ontario
Recorder: Mandeep Arneja of
John started by discussing some of the good
and innovative things that have been happening in
After this, John talked about how adults with ASD have been neglected, as most funding, resources, and attention currently go to children. He noted that the last time the Autism Society of Ontario had a focus on adults was in 1991, and that none of the recommendations that were made then have been implemented by the provincial government.
John then got everybody to meet everyone else at their table by introducing themselves and talking about their connection to autism.
Autism is a wide spectrum disorder. This requires individualization of supports.
Services are only one way to address needs. This requires an understanding of community
Deficits, problems, and needs alone cannot frame what we require. This requires also a focus on strengths and capacities.
Professionals alone should not make all decisions about supports. This requires participation of individuals and families.
John then listed the things that adults with ASD are in need of, based on the 1991 report, and the addition of three other needs identified since then:
1.Need to communicate
[next 20 minutes were spent in groups at
3. The need to have a safe place to live was rephrased with, “The need for safe, caring, and affordable places to live, based on individual strengths and needs, where persons are welcome and involved in their communities.”
4. The need to work (paid/volunteer) was rephrased with, “Supports and funding should be available to assist the individuals in exploring their interests and strengths. Employment opportunities can provide positive structure, self-esteem, and involvement in their community.”
5. The need for recreation / leisure activities was rephrased with, “Leisure activities need to include the following aspects: individualization and choice; body, mind & spirit; personal relationships with people who care; accessibility (e.g. transportation costs, etc.)”6. The need for advocates to ensure rights are not violated was rephrased with, “The need for advocates to ensure rights and needs are respected, and not violated, by removing barriers, and by facilitating the advocacy of those who may not have a voice in a way that each person’s uniqueness is addressed. This is done by promoting advocacy as champions and as a result is less confrontational.”
7. The need to have relationships with people who care was rephrased with, “The need to change community expectations so that the individual and their families can grow relationships with people who know them. This must be in a secure and respectful environment.”
8. The need for citizenship opportunities was rephrased with, “People with all abilities should have the rights and responsibilities and inherent full citizenship. This includes housing, meaningful work, recreation relationships, financial well-being and security, advocacy support in times of needs, education opportunities, timely access to appropriate medical care, and transportation.”
9. The need for supports
to be adequate and appropriate
for each person is
still a need, as there is still not adequate support for each person.
10. The need to adequate and sensitive medical services is still a need, but it is a need for all individuals in society, not just adults with ASD.
After lunch, John
stated that in order to provide ample services for
adults with ASD, we need to call on best
practices. John said that a best
practice can be defined as “what is working well in
The biggest example noted of a best practice is individualized funding. John stated that the government needs to have this available for more families. However, according to someone attending the meeting, individualized funding is no longer available for new families, and that it is only available for families who already get it.
Other examples of best practices include
school-age funding (as it helps awareness),
Our next task was to meet in groups again at our tables and discuss what we should do to expand best practices (i.e. how do we expand some of the things we like).
following is a list of Things to Do to expand best practices, and
effectively to the needs. We came up
with this list in groups.
John drew a conceptual diagram to show what is needed as we move toward supports that are individualized, connected with community and based on the values of self-determination and community.
1. It was decided that we should make a report of the proceedings of this meeting.
2. Before leaving, everyone interested in continuing the discussion gave their contact information and a note of their connection to autism. From this, small steering groups were to be set up so that we could follow up on things that were decided at the meeting. 3. A follow up meeting was to take place some time in the future.
4. Finally, it was decided that eventually, a policy document was to be created.