For 17 years, Saskatchewan Families for Effective Autism Treatment (SaskFEAT) has been supporting families on their journey with autism, but after difficulties filling volunteer positions, the non-profit has announced it will be closing its doors October 1.
Arden Fiala, who has an autistic daughter, has been SaskFEAT’s president for eight of her 10 years at the organization. She’s been trying to find new people to pass the baton to for the last two years.
“We do not have the capacity of a working board, as well as I’ve been now involved for just over a decade and it’s time, like I am burnt out,” said Fiala. She said that parents with autistic children already have a lot on their plate and struggle to take on more work.
“As parents, we’re immersed in autism 24 hours a day, seven days a week. We’re taxed, we’re frustrated, we’re tired and whatever little energy we have is not going to go into volunteering and doing more work with autism.”
Saskatoon mother Patti Biwer is kept busy by her 13-year-old daughter Acacia — who has autism and Down syndrome — and her 11-year-old son Andrew. It’s the family support SaskFEAT provides that Biwer uses most.
Through donations, SaskFEAT has provided grants to siblings of autistic kids for what Fiala called “sibling respite,” and this is what Biwer appreciates for her non-autistic son.
“That’s just something that people don’t often think about, is the fact that there’s other kids in your family,” said Biwer. “My son gets left out and so SaskFEAT has been awesome in providing a grant so he could go to summer camp and he could do different things.”
A hole will be left in services for families of autistic children in the province once SaskFEAT shuts its doors, said Biwer.
“It’s a loss,” she said. “If your whole family is functioning better then, you know, you can function better as a parent and you can provide better for your child.”
Arden Fiala, president of the Saskatchewan Families for Effective Autism Treatment (SaskFEAT). ARDEN FIALA / SUBMITTED
But the most important service SaskFEAT provides is connecting families on a journey with autism with other families on a similar journey, said Fiala, which has been a help in her own life.
“I’ve been so blessed to find other parents that have daughters on the autism spectrum, because that’s a different perspective versus having a son,” she said.
“The way that I can phone another mom or I can phone a professional and get them (to answer) questions to assist me on the autism journey with our daughter and our family, so that to me is invaluable. You cannot put a number to it.”
Fiala hopes that the organization has been able to connect enough families across the province that the families will be able to maintain a network of their own once the organization is dissolved.
SaskFEAT’s dissolution will also leave a gap in autism advocacy across the province, said Fiala, and she worries that autism will not now have a strong voice calling for government action.
“Sometimes I wonder with the advocacy piece, have we made an impact? Are we being heard?” she said.
“I hope SaskFEAT has connected enough parents with other parents that the impact might not be so difficult, because we still have parents that are advocating for not only their own children but assisting other young families or newly diagnosed families.”
SaskFEAT will begin dissolving on October 1, and Fiala said the non-profit is hoping to have everything sorted out by the end of December, with the website and Facebook page coming down, leaving no way for people to contact the organization.