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Autism families need better supports

The lack of services and supports for people with autism spectrum disorder (ASD) and their families/caregivers continues. Investigative reviews are promised, perhaps even started, but we see no results. Consultations are held; change is promised, but never seems to happen.

Encouraging words of support are voiced by decision-makers, but action is rare.

Change is needed for those affected by autism, across their lifespan: pre-school, school age, young adult and aging adult.

Autism Society of NL (ASNL) advocates for government to screen all children for ASD between 30-36 months; deliver a diagnosis within six months; and begin followup direct therapy supports within three months of diagnosis. No child can wait longer than nine months from referral to diagnosis to direct therapy intervention.

In areas covered by Eastern Health, the wait list for followup therapy service is 16 to 18 months, and longer elsewhere in the province. Private therapy support services often need to be accessed. Families should not have to cover the cost themselves.

Changes are needed at school age. When seeking support from the Special Child Welfare Allowance (SCWA) to provide nine hours of math tutoring to a student entering a new elementary grade, I was informed that SCWA does not cover tutoring. In fact, the family is unable to access any support from SCWA because the student’s IQ score is above 70.

Numerous children whose families are in dire financial need are denied funding support from the SCWA because their child’s IQ score is above 70. This, despite the fact that the SCWA is designed to enable families to purchase items and/or services which are necessary due to the child’s ASD.

Inclusionary school supports exist in policy and on paper; they need to consistently exist in practice. For three years we have argued that students with medically diagnosed anxiety should be allocated student assistant time; decision-makers in the Department of Education will not acknowledge the criteria should change.

The in-school delivery model for student assistant support has to change, too. Students with ASD often have co-morbidities, and their needs can be complex and severe. Giving student assistant time to students with ASD should never take service time away from other students who need and are allocated support.

Comprehensive professional development/training for educators and student assistants about ASD is needed. Online modules alone cannot deliver what educators need and want. A comprehensive, three-year plan (with followup) to in-service educators about ASD is essential. This type of focused training was a success in raising LBGTQ awareness levels amongst educators, and when new Smartboard and Teamboard technologies were introduced. Better training has so much potential to effectively equip educators and support staff with knowledge to help students with ASD, and successfully keep them in school, with peers, learning and reaching their full potential.

Change is needed for young adults. A young adult with ASD attends university and lives with foster parents who are now retired. The student wishes to live independently and continue schooling but is denied financial support upon reaching the age of 21 years, and other supports, because his IQ score is above 70. IQ was never developed or meant as a means to limit services. IQ is not a good identifier of a person’s ability to live and act independently.

Change is needed for adults, too. An aging couple, with an adult in need of constant supervision, saw Dad give up his career and remain at home, with Mom continuing to work to support the family. When Dad developed cancer and required treatment, no respite support was provided because the adult’s IQ score was above 70 when measured in school many years ago.

ASNL has responsibility for providing programs, supports, services, outreach and job readiness/employment programs for those on the spectrum, and their families. We receive less than half of our annual operating budget from the provincial government to deliver on that responsibility - for the entire province.

ASNL sincerely appreciates government support; it truly makes a difference. However, as it stands, we can only ever hope to help a portion of the masses who need it. It is time for a focused approach to improve the lives of those affected by ASD and their families.

Scott Crocker, executive director,

Autism Society of

Newfoundland and Labrador

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