Right now, they are home, in confinement without the resources and support from therapists, schools, family and friends.
Erica Daniels of Gladwyne tells Action News, "First of all it's isolating in general to have a family member with autism."
The restrictions of COVID 19 have made life for Daniels and her 15-year- old son, Leo even more isolating.
Leo was diagnosed with autism when he was 21 months old.
With schools and special programs shut down indefinitely, not only has Leo's educational and behavioral progression been interrupted but the extreme psychological and physical stress already present, has been made worse.
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Daniels says, "Typically children with autism have a whole... team of experts working with their child and all of a sudden, abruptly, that is gone."
Daniels and Leo have been staying in touch virtually with other families affected by autism through her non-profit, "Hope Grows For Autism". '
Daniels says other members of the support group have been really struggling with this unexpected transition.
"Their children are just so unhappy, so confused. The things that they like to do are not available. And in some cases, even having to make a trip to the ER for a physical injury due to a meltdown", says Daniels.
Dr. Wendy Ross, Director of Jefferson University's Center for Autism and Neurological Diversity says in addition to the everyday stress, there are major concerns about the long term effects the shutdown will have on the special education law.
Dr. Wendy Ross of Jefferson Hospital says there is talk of loosening the law because of COVID 19.
Ross explains, "Every child who receives special education is entitled to individual education plan which has specific goals in it, and if they are not making those goals they are entitled to more or different services. And now with children not getting the services how they were originally intended, what will happen?"
However, at this point, families affected by autism should be dealing with situation one day at a time.
To help with this, Jefferson has launched a virtual learning series on its website to help explain the coronavirus and expected behaviors like hand-washing and social distancing. You can find them here: https://hospitals.jefferson.edu/departments-and-services/center-for-autism-and-neurodiversity.html
Ross also recommends taking advantage of the warmer weather both for the mental health of those on the spectrum and their caregivers, suggesting families go for a bike ride or run together and never "underestimate the power of fresh air and sunlight".
Daniels echoes that advice and said, "Take a walk just to clear your head you need to take that time to do what you need to do to take care of your family."
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Below are some additional strategies families can use to help them through this difficult time:
Visual or social stories can be huge in explaining the virus and safety measure like hand washing, as well as coping strategies for COVID-19. Please see this link here.
Allow yourself some leeway, and your child leeway, to do less than expected for the time being. Decreasing the pressure can be huge for reducing stress and negative outcomes.
Exercise is important for everyone but has been especially shown to reduce anxiety in those with ASD. Look for telehealth exercise programs online. Take a walk or bike ride. Be exposed to sunlight and fresh air are important.
Being inside also does not mean staying in one place. If you can, switch rooms for different activities to get a fresh perspective.
Keep a schedule.
Do not let sleep/wake cycles flip.
Showering every day can also improve a sense of well being.
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Be clear that we do not know and that it is likely to be a matter of weeks and not days until things change if you do not want them expecting a change every day.
Loosen some restrictions on TV and electronic time as a tool for downtime.
Breathe. You do not have to be a master at meditation to take a moment and take some deep breaths. Taking deep breaths is free and has been shown to reduce anxiety.
Use guided meditation
Look for online support groups
Try to make dinner together. The act of finding ingredients and cooking a meal can be a bonding experience and help build organizational skills.
Find a silver lining. Take this opportunity to go old school with board games. These games can be fun and also teach us how to take turns and anticipate the moves others make, all useful skills for those with ASD.
Think positively. One day this will pass. Until then, when you feel down, everyone in the house should make a list of three things to be grateful for.