Autism families have been significantly affected by the changes the COVID-19 quarantine has brought, so we reached out to Alison Singer, Co-Founder and President of the Autism Science Foundation, for expert guidance.
Adapting to new routines while quarantined has been challenging for most families. From providing the support parents need to reduce anxieties to advice on what families should do if they suspect a child with autism has coronavirus, Alison delivers the answers. She also includes the Centers for Disease Control and Prevention’s (CDC) new autism prevalence rate stats and explains why they have increased over time.
What would you say are the top issues concerning autism families right now? What can families do to get the support they need?
Our families are really struggling to adjust to COVID-19 quarantines. children with autism struggle any time there is a change in schedule, and COVID-19 has wreaked havoc with their routines. Autistic children with intellectual disability don’t understand the word “pandemic” and don’t know why things are different. It has also been very hard to make necessary behavior changes, like social distancing and frequent handwashing, because our kids don’t understand why things have changed.
Our families are also facing challenges around distance learning. Children with autism are used to working directly with highly trained special education teachers, often in a 1-1 setting. Parents are not trained to educate their kids at home and manage their behaviors. Physical therapy and occupational therapy cannot be delivered over Zoom.
Speech therapists are just starting to figure out how to provide therapy online. Also, parents are struggling to do their own jobs at home, while hoping their children with autism don’t run out of the house or harm themselves. It’s a lot.
Finally, children who are in residential placements, like my daughter Jodie, are in lockdown and their parents can’t visit. Jodie has severe intellectual disability and doesn’t understand why the family hasn’t visited for three weeks. We have tried Facetime, but that just makes her want us more. It’s heartbreaking for all of us.
The Autism Science Foundation has created a resource page for families with practical advice about how to handle some of these challenges: Autism and COVID-19 Resources.
How should parents talk about coronavirus with a child with autism? Is detailed information too much? Should they try to keep it simple?
It completely depends on the child. Some children will be comforted by detailed explanations about why their life has changed so drastically and may want to hear this over and over and over; for others, it may cause unnecessary anxiety or fear. social stories have been helpful for some families. Read through the excellent online resources available and see what makes sense for your own family.
As you well know, children with autism like routine and predictability. With schools out and programs canceled, do you have advice for parents trying to help their children rapidly transition to a new way of life?
One of the most important things parents can do is create a routine at home and try to stick to it. Some experts suggest mimicking your child’s school schedule to the extent possible. This isn’t an instant fix for the unease that many children with autism are feeling, but in time, the predictability will make a difference. Parents should also, within reason, consider giving their children some control over their environment. Where possible, try to offer some choices.
Most parents and children are experiencing some level of anxiety and uncertainty right now. What is your advice to autism parents trying to handle their own stress while trying to manage the heightened anxiety in their children?
Our parents are struggling and it’s heartbreaking. Try to find some time for yourself, even if it’s just to take a hot shower or watch half an hour of bad TV. Relax the limits on your child’s screen time if it buys you some time to destress. Many kids with autism like to take walks so this is something families can try to do together every day that is positive for everyone’s mental health.
These are incredibly difficult times, and there are more on the way; reminding yourself that this is only temporary and beyond anyone’s control can help keep a positive frame of mind.
Also, don’t be afraid to ask for help. For example, many families have said they are afraid to take their kids with autism to the grocery store because they don’t understand the new social distancing rules. Ask your neighbor to buy food for you. One positive thing to come out of this crisis is that communities are really rallying to help those who need it. Ask!
While we don’t like to think about it, what should families do if they suspect their child with autism has the coronavirus?
First, the family should call their doctor and ask if there are any drive-up testing sites in the area; this avoids a doctor’s office or hospital setting, which can trigger some children with autism. If a child or family member with autism presents with more urgent symptoms and needs to go to the ER or the hospital, consider the following:
- The ER may be understaffed, so be ready to give a clear and concise history of your child or family member’s current symptoms, as well as to describe past medical issues, allergies, seizures, etc.
- Be clear about when the symptoms first started
- Explain how your child or family member with autism communicates, particularly for patients with autism who cannot verbalize pain or discomfort
- Explain what approaches can help your child or family member with autism feel calm
- Give clear examples of approaches to routine care tasks that may provoke fear or distress
- Offer staff alternative approaches to allow for increased cooperation with routine care tasks such as measuring vital signs or fitting equipment that administers oxygen
- Try to stay calm. Our family members with autism may react negatively to seeing their caregivers visibly upset.
- Hospitals across the country are limiting visitors. Be prepared for the hospital to allow only one parent or caregiver to stay with your child.
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Finally, parents should be patient with hospital staff. ERs and hospitals across the country are overloaded, and while a child with autism or any loved one being hospitalized is heartbreaking, being ready to advocate for your child in this stressful scenario can lead to better outcomes for all involved.
So many people with autism are affected by the upheaval a pandemic can bring. Could you please update us on the CDC’s new autism prevalence rate stats? What do you attribute these changes to?
The CDC reported that autism prevalence increased to 1 in 54 from 1 in 59. Most of this increase can be attributed to improvement in diagnosing racial minorities. For the first time, the rate of diagnosis is the same in white and African American children, although Hispanic children are still diagnosed less often.
There is no reason for these differences other than lack of access to diagnosticians and lack of awareness of the early warning signs. So you could look at this prevalence increase as a positive thing in that we are reducing disparities in awareness and access to diagnosis, which is something the autism advocacy community and the medical community have been focused on for the past few years.
If you found this article helpful, please consider sharing it on social media or linking to it from your website to help other parents. You may also want to check out our other resources on coping strategies for autism and COVID-19.
Alison Singer is the Co-Founder and President of the Autism Science Foundation. Alison manages the foundation’s strategy and directs it to fulfill its mission of supporting autism research and educating the public to increase awareness of autism and the needs of individuals and families affected by autism. Alison has served on the Interagency Autism Coordinating Committee (IACC) since 2007. She also currently serves on the executive board of the Yale Child Study Center, on the external advisory board of the Marcus Autism Center at Emory University, and on the external advisory board of the CDC’s Center for Birth Defects and Developmental Disabilities. Alison chairs the International Society for Autism Research public relations committee and is a member of the IMFAR program committee and community advisory committee. She graduated magna cum laude from Yale University with a BA in Economics and has an MBA from Harvard Business School.