Disclaimer: I am not a psychologist or psychiatrist, however I have a degree in communications and a background in journalism, which helps me to be hyper observant and able to gather information from many sources.
We also have three children in varying levels on the autism spectrum and during the pandemic, I was a stay-at-home mom and interacted with them daily. I also started taking part in many forums and continue to stay active and continue to add more forums relating to individuals on the autism spectrum. Through all of this, I could see and continue to see a disturbing trend not just in our family, but in many others.
The Pandemic
When the pandemic started, it uprooted people’s daily lives, forcing immediate and drastic changes. For individuals on the autism spectrum, who frequently struggle with smaller changes in routines, this was like running full force into a brick wall. It had severe consequences.
It led to a disruption of routines, isolation, changes/removal concerning services, decreased social interaction, increased anxiety/stress and changes with school/jobs. Any one of these things can cause a change in behavior from an individual on the autism spectrum, but many experienced several of these and some had all of them.
Difficulties With School and Services
Some schools and services handled the pandemic as well as they could. While others completely fell apart. It forced teachers to teach online. For children in elementary school, this is extremely difficult and most struggled.
Some, like my youngest son, couldn’t handle online classes at all. He actually thought that the computer had eaten his teacher and classmates. When his picture appeared on the screen, he thought the computer was going to eat him too and ran and hid under the couch.
Many students regressed both socially and academically. Even now, we are still seeing the results, and it may take years to catch up to where they were. My youngest is just now starting to show signs of where he was in pre-k and he is in second grade.
According to the 2022 “Nation’s report card” students have lost decades of academic progress. This is among all students, whereas special needs children faced even more challenging obstacles as most of their learning is hands on. This did not translate well to online learning.
This isn’t just affecting elementary through high school, but even colleges are dealing with the results of pandemic schooling. Many colleges started out this year realizing that students weren’t at the same level as previous pre-pandemic levels and must adjust courses to start at a more basic level.
Some colleges aren’t adjusting, which makes it just that much harder for students to catch up and gain the necessary knowledge to complete their courses.
Many special needs children received therapies in school. Some received online services, and some received no services. Some schools could contact their providers, and the children could go individually into offices for their therapies.
Most in-home therapies were stopped. And some haven’t restarted yet. We’re working with a couple of groups who are still not allowing their employees into client homes yet. But they are hoping to this coming spring, a full three years after the start of the pandemic.
These changes to therapies caused a rise in undesirable behaviors and regression for many children. Many parents still struggle with the results of new behaviors that developed because of the pandemic.
Social Skills Regression
Social skills normally can be a challenge for those on the autism spectrum to learn. With the pandemic, many children were isolated and the chance to interact with others was greatly reduced.
As a result, many regressed and are now having to re-learn how to interact correctly with others. Many times, they didn’t get a chance to practice dealing with frustration, anger, and communication skills. It’s one thing to practice these with people you know, but a completely different thing when dealing with the public.
Can We Ever Get Back To The Way Things Were?
Some things are here to stay. People have adjusted to the changes that were made during the pandemic and some companies/schools/services liked the changes and most likely will not return to the “old ways.”
Many service providers are still experiencing labor and funding shortages. This is causing higher prices and less availability. Will they remedy this in the future or could it get worse? No one knows. I hear complaints all the time on forums about people who say their school system is bad, or the services in their area are bad, and sometimes both.
Numbers of diagnoses are rising, while the number of service providers, grants and service programs are reducing. Frankly, I’m more concerned about things getting worse instead of getting back to the way things were.
How Can We Fix This?
The autism community needs to help each other now more than ever. There needs to be better ways of letting people know what services are out there and what the qualifications are.
Let People Know of Programs
When people don’t qualify for a program, then suggestions of other programs could help people to get the services they need. I would love to see more interaction between families with special needs children, but many don’t seem to want this.
I hear over and over about special needs children wanting friends, yet there are few opportunities for them to meet other special needs children who they might develop friendships with.
Special needs groups need to work with their communities and find opportunities for individuals with special needs to develop social skills, friendships and activities to give them fuller lives.
Special Needs and Sensory Friendly Events
Churches could develop programs and religious services geared toward individuals with special needs. In our area, there are no churches with special needs services. Our eldest son is too old for the youth service (which is a better fit for his comprehension level) and doesn’t understand the adult services at all.
Entertainment businesses occasionally hold sensory nights, however many of them do nothing different except reduce the price for a few hours.
A local zoo recently held their first sensory night. I called and asked what they would do differently. They took out all the interactive keeper talks, train ride, and feedings. They said really it was just a reduction of the number of people and not anything special.
Now on the flip side, a local Hands On Discovery Center holds a sensory night about once a month. They put it on a day that is not normally open, dim the lights and reduce the audio on the exhibits. They also do not charge for the event and require registration to keep the numbers reduced.This is a well-thought out sensory night designed to help the special needs community.
Local special needs groups need to work with the local police and fire departments and create contacts to help both learn about each other. They need to be around each other in calm environments so emergency employees can see how they normally act.
Working with First Responders
It is also helpful to have special needs children to see and speak with firefighters outside of their uniform and then see them put it on and talk to them, as it can be scary and confusing during an emergency to deal with a firefighter who looks and sounds different from a normal person.
Likewise, police need to learn about autism, and know that their responses may not be like those of a neurotypical group.
Integrating with Other Groups
A local retirement community recently has started doing events for individuals with special needs. This has worked out really well for everyone involved and has given them opportunities to enjoy each others’ company.
A local bowling center recently started a special needs bowling league. They are charging $5 for two games and free shoe rental and offer door prizes. This is an affordable and fun activity that provides exercise, social skills development and the opportunity to develop friendships.
Finding Solutions
Special needs parents need to work together to help their children succeed in school. When something isn’t working, join together and present a united front. Complaining individually rarely produces good results for everyone. Working together gets things done.
Encourage things that are being done well and offer solutions for things that aren’t working. When bringing a complaint, always have one or more solutions for things that can help. If you give them a simple answer, many times they will take it.
Special needs families need to support businesses that employ individuals with special needs. Special needs groups need to find local businesses that are willing to hire special needs employees. Jobs provide achievement, opportunities for friendships, opportunities to learn social skills and interaction and provide a source of income.
If we want a better, more fulfilling life for our children with special needs, then we need to help set it in motion. Complaining does nothing. We must react and seek help from each other and our communities.
Don’t be afraid to think outside of the box. Look for ways to increase community awareness and help. Speak with people in the community who are willing to help. Look at what other communities are doing well and try to implement them in yours. Get involved in local special needs groups.
If we want change for us and our children, we will have to work for it.
