Coping Thru COVID: Challenges for Autism Families

“Many autism families were feeling isolated before COVID-19 — now that feeling is stronger than ever.”

 

Hi, My name is Lindy and I’m an Information officer with AutismBC from Coquitlam, BC. My husband’s name is Eddie and my son’s name is Adrian, he’s twenty-six-years-old. He was diagnosed with autism when he was five.

When Adrian was two-and-a-half, we noticed that he was gradually talking less and withdrawing to focus solely on his interests. By the time he started preschool, he was behind in verbal communication. After a lot of research, we understood that it was autism and we proceeded to get a formal assessment.

Back in the Nineties, we didn’t have much provincial support: we did everything on our own. We set up home programs, sourced funds, coordinated support workers, and advocated for our children without support nor guidance. Everything fell on the shoulders of the families.

I wanted to make a change, so I joined AutismBC when Adrian was six. Because I have already navigated the autism journey, I want to share my knowledge and experience with other caretakers so their journey can be a little bit easier. On behalf of the Resource Team, we want families to know that they’re supported and we want them to feel empowered and connected with others. You can help by donating to the Coping Thru COVID fund!

 

“The most asked question has been “who do I talk to about my concern?””

 

This year, COVID has hit us all hard. For families with autistic children, there have been NEW challenges.

Isolation

Many autism families were feeling isolated before COVID-19 — now that feeling is stronger than ever. A vast proportion of families require in-person care or support workers within their living environments, or at centres that are now closed due to physical distancing measures. Many of the supports and services that families had prior to the shutdown in the spring never fully returned, and those that did return, are now in jeopardy of being discontinued yet again.

Overwhelm

Families are feeling more overwhelmed than ever. The switch to online learning is creating more inequality for autistic children because they often need more hands-on services at school. Autistic children may have challenges adjusting to changes in routine, or the lack of one. Many parents and caregivers have said they are struggling to balance their professional and household responsibilities, while also supporting their children. On top of those changes, caretakers are spending more time with their children without getting the respite they need. Families of autistic adults are burnt out trying to make ends meet during these uncertain times.

Confusion 

The world may have slowed down, but autism hasn’t. Because of COVID, the wait is at a historic high and continuing to grow. Families are waiting approximately 73 weeks (or more) for a publicly funded autism assessment in BC. Parents with young children waiting for an assessment are concerned that the long wait means missing the early intervention opportunities of their children. As the typical resources have changed, or are no longer available, they also feel uncertain about what they can do during the wait. There is further confusion surrounding funding and supports for children that aren’t attending in-person classes. Overall, the stress is mounting with no end in sight.

Since COVID-19, AutismBC’s phone and email information and support service have been busier than ever. Our Resource Team has responded to 4783 inquiries and including a 30% increase in March, with one-third of the inquiries directly linked to COVID.

64 calls were more than 20-minutes-long and required a higher level of support. Of those calls, 15 were over 45-minutes in length. The most asked question has been “who do I talk to about my concern?” People are looking to talk to a person who understands them and can help them find the right support and resources.

 

“…help autistic individuals and families not only survive but thrive.”

 

How AutismBC helps

We’ve moved our in-person programs and services online and ensured that we have the resources to respond to the needs and voices of our community while following COVID-19 safety measures.

Through virtual programs like our Waiting for Assessment Workshops, Community Support Groups, Coffee Meetups, and AutismBC Goes events, autistic people, children and youth, families and caregivers throughout the province can access information, talk to professionals and each other for support, and connect in fun ways so that they don’t feel so isolated.

For parents and caregivers whose autistic children’s home services have been cancelled, we’ve created an online “Behaviour Support at Home for Parents” workshop. For families who have felt COVID back-to-school policies have neglected their autistic children: we are here to help, as we did earlier this year when AutismBC’s Board Director, Kaye Banez,’ wrote an open letter to the Ministry of Education advocating for our families.

How YOU can help AutismBC

As our province has increased restrictions related to COVID-19, the feelings of loneliness, overwhelm, and confusion are at risk of being amplified during the holiday season. Now, more than ever, AutismBC needs to be there to respond to the needs of the autism community. This holiday season, you can help by giving to the Coping Thru COVID Fund. The COPING THRU COVID FUND will go towards virtual programs that provide social connection, support mental health, and reduce isolation to help autistic individuals and families not only survive but thrive.

Please visit www.autismbc.ca/donate to make a donation.

• A $20 donation can help an autistic youth take part in a virtual AutismBC Goes Event.
• A $50 donation can help a parent or caregiver attend a Waiting for Assessment or Behaviour Support at Home workshop.
• A $100 donation can help an autistic youth to have free AutismBC Goes experiences for one year.
• A $250 donation can fund an AutismBC Virtual Coffee Meet-up for one year.

We are all in this together, and together we’ll get through it.