There are many gaps in the current system, beginning as soon as a diagnosis is received and continuing all through the lack of adult autism support. Here are some key issues we have identified:
Receiving the Diagnosis
Most parents have no idea what “autism” means for their child, but they do know the importance of early intervention. Accurate information regarding implications, prognosis and available services and supports is crucial.
Lengthy wait-lists for support and therapy are frustrating. Any wait time for the introductory supports (Let’s Get Started, CSW worker, SMD Outreach) is unacceptable. Current wait times:
- Let’s Get Started (5 months)
- Children’s disAbility Services worker (2-3 years)
- SMD Outreach – Speech/Occupational/Physical Therapy (8+ months)
- Child Development Counselor (6+ months)
The many service providers supporting children with autism is very confusing for parents. It is hard to know whom to seek out for support and who is responsible for what. There are many organizational and professional titles to understand.
The wait lists for all early childhood autism services are so long that many children are being missed, or given ineffectively short terms of service.
- Autism Outreach (10+ months)
- Relate Program (6+ months).
Frequency of family visits: Twice per month works well; once a month or less isn’t sufficient.
Program quality assurance and accountability:
- There should be a strategy in place to measure how well and in what ways each child is progressing, and whether the program is effective for that child.
- It should be possible to switch programs, if parents or professionals feel the child’s program isn’t a good fit.
- Parents should also have a way to measure their own learning. For example, a journal or a list of goals for parent strategies can be helpful (as provided in the Relate program).
Transition to School
Children continue to grow and develop, but with Autism Outreach service ending during the Kindergarten year, parents feel abandoned.
- The transition from early intervention to education support programs is neither smooth nor consistent.
- Parents must “start over” with professionals who don’t know their background, and often find a separation between home needs and school needs
A significant gap exists for those parents who were not part of the Early Intervention structure. Current programs (eg: Autism Outreach) focus on families whose child received early diagnosis, and are unavailable to those who received a later diagnosis.
The wait-list to access a Children’s disAbility Services Worker, means that families are left unsupported for a considerable time.
MATC offers short-term consult to address a specific issue – and is not structured as a generalized parent support, with general training and long-term follow-up options. Professionals at MATC are seeking to learn more about developmental therapies (however, they are limited in their ability to help families apply developmental principles by the program capability and the goals of the program).
School personnel have varying levels of experience, support and expertise in working with children and families affected by Autism. Often, there is a patchwork of developmental and behavioural approaches being used – which can become an ongoing struggle for parents who desire a consistent developmental approach for their child.