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More access to autism specialists needed

Ashley White with her two daughters, Julia (left) and Emily Savory. – File photo

By Jaymie White Local Journalism Initiative Reporter

PORT AUX BASQUES — Compounding the already stressed healthcare system is the difficulty for small town and remote residents to get the same access to services as larger urban centres.

A few weeks ago in December 2022, an individual from Australia posted on social media to express interest in relocating to the town with their family. The Aussie’s post shared that they have a child on the autism spectrum, and while many in the comments praised their interest and expressed their sincere love for Port aux Basques and the services available, some questioned the decision and raised the concern of difficulties the family could face if they do indeed make the move.

Ashley White, a parent of a child with autism, was among those who voiced her concerns.

“I know COVID has done us in big time, but when I didn’t know my child was autistic and I couldn’t get any answers – she was just hanging off my leg, she didn’t speak, she was just humming – and being a mom, you’re a teacher, you’re a friend, you’re a mother, you’re a cook. You play many roles being a mother, and I never dreamed my kitchen would have to be turned into a classroom in the way it was to teach her a little bit where she was behind.”

White said she was not expecting the level of backlash she received when she made the comments on the Facebook post. “The backlash I got, I wasn’t being negative, I was being honest,” explained White. “If no one speaks up, how is anything going to be fixed?”

White said she loves the town and she understands a lot of what she experienced could be a result of COVID, but she wanted to share her own struggles openly and honestly.

“In Port aux Basques we have some nice, compassionate people,” said White. “I think there is more compassion here being a smaller town. We do have Joan (Chaisson, co-founder of Autism Involves Me) loaning out resources. We have people donating money and stuff, yes, most definitely yes. I can’t take that away from Port aux Basques and I can’t take that away from Joan. I’ve never said anything bad about that and I won’t. I will praise that to the heavens. When I mention anything negative, it’s government related. I want people to understand that.”

White said that with the severe impacts on the community due to the pandemic, access to services and items she needed was difficult, not to mention the severe housing shortage that was only escalated after Hurricane Fiona in September.

“It first started and we had to have a behaviour specialist, and it had to be Zoom meetings because they were in Deer Lake. We didn’t have one here in Port aux Basques because she was on maternity leave and there was no one to fill her place. So even now, if she goes off work, there is no one to fill her place. So you could be days, weeks or months without the services,” said White. “I have a behaviour specialist here in town now, but we haven’t seen a behaviour specialist since September. She has been on leave. I did contact her manager just to ask why there isn’t someone else and I didn’t get any answer on that because with any job you can’t rely on one person. Anything could happen to that one person. That’s not a good system, but I guess they just don’t have the people, so we are very lucky to have a behaviour specialist.”

White explained that none of her concerns are reflective of the work the specialists do in the area, that they are fantastic, but they need more people to help, especially in the face of the ‘new normal’.

“We also have a speech therapist. He’s excellent, but when they had the COVID swabbing at the Lions Club, whoever their boss is put them on the front lines to do the swabbing so any autistic children were unable to get their appointments. Speech is once a week, behaviour is once a week or once every two weeks for some families, so we lost some services because that’s what their bosses asked them to do. Do I agree with that? No and that’s not on them, but it goes to show that the bosses don’t mind taking away from us.”

Some specialist appointments are unable to be held in Port aux Basques, so White has to travel to regularly to Corner Brook to access those services.

“The developmental psychologist is in Corner Brook. We’ve only been in there once because it was the only time I was able to see her. She wouldn’t do Zoom or anything. She wouldn’t bend, and driving two-and-a-half hours to go to one appointment for an hour is hard,” said White. “I tried staying overnight, driving in and staying at a hotel, going to see all the doctors, but it was hard on her. She stopped wetting her pamper. She was holding in her pee and everything, and I saw a lot of aggressive behaviour from her because she was over-stimulated and not in her own home.”

White said she would be lost without the local volunteer group.

“The resources, they do have the local AIM group and they’ve been a lot of help. I got a loan of a sensory chair from them. I got a loan of a peanut ball. That was a lot of help,” said White. “We’re lacking the specialists, but her having those items in her resource room, they do help. They even have a weighted vest, and you can try it and if it doesn’t work you can give it back. I did get a loan of a weighted blanket and it did work so I went out and got my own so they could have it back for another child to try out. The resources from Joan are really good. They are a plus 100 per cent, especially because we lack the specialists we need.”

In response to email inquiries, Western Health issued the following statement that outlined the available resources, but did acknowledge that depending on what an individual needs there may be a wait period to access them.

“Western Health provides a variety of services for children diagnosed with Autism Spectrum Disorder (ASD) through a number of programs. Services are also provided by the Janeway outreach program, the Newfoundland and Labrador English School District as well as Autism Society of Newfoundland and Labrador.

“Through Developmental Health, Western Health programs and services for children diagnosed with ASD include: Audiology, Speech-Language Pathology, Direct Home Services Program, Developmental Psychology and the Autism Assessment Team. When a child is seen for an assessment, and if a diagnosis is made, specific interventions related to autism spectrum disorder may be recommended. There may be a wait for some services, however others are readily available depending on the child/youth’s needs.

“Through Western Health’s Community Support program, Support Services for Children, a Provincial program, is offered to children and families to provide support at home. After completion of an assessment, families may be able to avail of home support, medical travel, equipment, or therapy depending on the child’s needs. Community Support Social Workers and Behavioral Management Specialist provide supports for this program. There is no wait list for the Community Support program.

“Through Mental Health and Addictions, counseling services are available for clients diagnosed with ASD and their families who may need therapeutic intervention around emotional management, anxiety, social skills, and behavioral concerns. Services can be offered individually or in a group setting, and in the format of choice for clients/families: in-person, telehealth or virtually.”

The province continues to expand services, but it remains to be seen if that will help families in more remote communities gain faster access to services, or at least remove the need for regular travel.

“As part of the implementation of the Provincial 2020 Autism Action Plan, autism services have expanded over the past few years and are continuing to do so. There has been an increase in diagnostic clinics, as well as intervention services. “Individuals who are looking for information about Autism services at Western Health can learn more at: https://www.westernhealth.nl.ca/autism-assessment-team/”

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