Supporting Adults with Autism Spectrum Disorder

 Date of Conference: 5 May 2004
Facilitator:  Dr John Lord
Number Attending: 71
Venue:  Italian Canadian Club, Guelph, Ontario
Sponsored by Autism Society Ontario
Recorder: Mandeep Arneja of Ottawa and Guelph

 

The purpose of this meeting was to identify directions for addressing needs and issues related to support for adults with autism. The meeting started with Margaret Spoelstra, Executive Director of the Autism Society of Ontario, welcoming everyone.  She thanked Patricia Gallin and Elizabeth Bloomfield for organizing the event, and then introduced  Dr. John Lord, who was the facilitator for the meeting. 

John started by discussing some of the good and innovative things that have been happening in Ontario that could support adults with ASD. 

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.

 [next 10 minutes were spent in groups at the tables]

 When we were done introducing ourselves, John then presented us with four assumptions regarding ASD and how to support adults with ASD.  The assumptions were as follows:

 Assumption #1

Autism is a wide spectrum disorder.  This requires individualization of supports.

 Assumption #2

Services are only one way to address needs.  This requires an understanding of community

 Assumption #3

Deficits, problems, and needs alone cannot frame what we require.  This requires also a focus on strengths and capacities.

 Assumption #4

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
2. Need for structure
3. Need to have a safe and caring place to live
4. Need to work (paid/volunteer)
5.
Need for recreation / leisure activities
6.
Need for advocates to ensure rights are not violated
7.
Need for relationships with people who come
8.
Need for citizenship opportunities
9. Need for supports to be adequate and appropriate for each person
10.
Need for adequate & sensitive medical services

 
Our next task was to meet in groups at our tables and decide if these were still needs.  And also, if they were still needed, we were to try to rephrase the needs in terms of the four assumptions stated above. John referred to this as “new paradigm” thinking. Each table was given a different need to work with.

[next 20 minutes were spent in groups at the tables]

It was agreed that all of the needs established in 1991 are still in fact needs, and that the new needs make sense as well.

The following are the new rephrased needs:
 1.  The need to communicate was rephrased with: “People with autism need the
opportunity to be listened to deeply so that their individuality, strengths and needs are recognized and respected.”

 2.  The need for structure was rephrased with, “An adult with autism needs respectful structure that gives choice, alternatives, responsibility, and is flexible over time as people’s needs change.”

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.


[60 minute break for lunch]

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 Ontario right now”. 

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),
clustering of services, crisis funding, and the OAARSN Web Site at http://www.ont-autism.uoguelph.ca

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).

 [next 20 minutes were spent in groups and the tables]

The following is a list of Things to Do to expand best practices, and respond more effectively to the needs.  We came up with this list in groups.
  1. Specialized supports for adults
  2. Determine number of people who have ASD, stats     (PALS)
  3. Raising awareness of ASD/PDD
  4. Assistance for transition services by families and parents (who should start this when person is age 13)
  5. Develop mechanisms for assessing Best Practices and advertising them.
  6. Funding needed across spectrum & know needs clearly.
  7. Need clear forceful advocacy collection.
  8. More interagency co-operation-training
  9. More opportunities for networking
  10. Support groups for adults in all communities and for various age-groups
  11. Need better communication at all levels and among all concerned, including:
  • chat rooms – best practice
  • community development
  • political level
  1. Inter-ministry collaboration –> Crisis Now
  2. Individualized funding (www.individualizedfunding.ca)
  3. Justice system & autism
  4. More funds for community parent groups
  5. Consistency of services across the province
  6. Employer funding (so they can hire people with ASD)
  7. Equitable funding-portability
  8. Communication from government

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.

Click to see this diagram


ACTION LIST

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.