Neglecting the Autistic During Covid-19
There seems to be a great deal of concern about this pandemic and it is not unreasonable to believe this is even more unsettling for young adults and children. During these times of uncertainty, coping with all of the unknowns, and adjusting to major life changes affects all of us. For those people afflicted with autism this can go beyond worrisome, it becomes bewildering and frightening which may increase anxiety, and cause involuntary behavioral problems.
To some degree, we are all struggling with isolation and cabin fever. The importance of reaching out to each other has become abundantly clear. This is especially important for disabled and autistic community members. Navigating school closures, the sudden loss of support providers, as well as caregivers and friends and having one’s activities restricted due to fears of contracting the virus is especially hard for those with autism. While writing for the Mighty.com, Christine Motokane claims: “A lot of autistic people thrive on routine”, in the case of the current pandemic, there may be times when you’re experiencing increased meltdowns from your autistic loved one. It is important to recognize that the sudden life style changes brought about this pandemic can cause major changes in an individual with autism and these behavioral difficulties are a part of the coping process. Motokane emphasizes: “Explain to the person that this will not last forever and that we have to utilize “social distancing” (like not going to a favorite restaurant or seeing favorite people) so we can conquer the virus faster.”
While talking about COVID-19 with someone with autism under your care the Autism Support Network recommends: “If you are caring for a child or family member with autism, it’s important to talk with them about coronavirus to ensure they have the information they need, but without unnecessarily frightening them.” On their web site: http://www.autismsupportnetwork.com/news/autism-and-coronavirus-covid-19-993087 they provide 6 steps of guidance to help with your conversation and avoid frightening:
- Try to talk with your child before they hear about the situation elsewhere, so you can understand what they heard and provide facts that are suitable for their age and level of understanding.
- Convey the information using a method the person prefers, such as stories or pictures.
- Allow the individual to process the information, this may mean they play out or talk about fearful topics. You can be on hand to soothe these fears and to be available to answer questions.
- Talk with you support system, such as school contacts, caregivers and any other support groups.
- Be on the lookout for signs of distress, there may need for additional support if they are anxious or showing signs of stress.
- “Be a source for assurance and positivity” for the autistic person to provide a feeling a safety during frightening situations.
People with autism may require additional assistance and encouragement while facing the challenges in understanding, communicating and adjusting to the modifications needed to maintain safety through the duration of this pandemic. There is an increased chance of anxiety and depression that may be intensified during our current stressful period. The University of North Carolina (UNC) on their web site, https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times has set up 7 support strategies which are designed to meet the needs of individuals with autism during this uncertain time.
“7 Strategies to Support Individuals with ASD through Uncertain Times”
- Support understanding
- Offer opportunities for expression
- Prioritize coping and calming skills
- Maintain routines
- Build new routines
- Foster connections (from a distance)
- Be aware of changing behaviors
In addition to these strategies, there are ready-made resources that are intended to help caregivers quickly and easily utilize these aids. The caregiver may want to consider involving the individual with autism in making the decision on which tools may be the most helpful. These tool kits are taken directly from the University of North Carolina AFIRM website (Autism Focused Intervention Resources & Modules).
UNC Tool Kits:
Supporting Individuals with Autism through Uncertain Times Packet
The Supporting Individuals with Autism through Uncertain Times Full Packet contains all of the content, strategies, and resources related to supporting individuals with ASD.
Supporting Individuals with Autism through Uncertain Times Full Packet.pdf
Supporting Individuals with Autism through Uncertain Times Article Only
The Supporting Individuals with Autism through Uncertain Times Article Only contains all of the content and strategies related to supporting individuals with ASD. This content is adapted from Hume, Regan, Megronigle, & Rhinehalt, 2016.
Supporting Individuals with Autism through Uncertain Times Article Only.pdf
Resources for Adults with Autism for Uncertain Times Full Packet
The Supporting Adults with Autism through Uncertain Times Full Packet contains all of the content and resources related to supporting adults with ASD.
Supporting Adults with Autism through Uncertain Times Full Packet.pdf
We are undergoing extraordinary times and as we attempt to navigate our way through lockdowns, social distancing and social isolation. In our own efforts to adjust, we may have unknowingly become complacent in regard to some the most vulnerable members of our population.
In a news article for health24.com, Hlengiwe Mkize describes: “autism is a developmental disability characterized by difficulties with social interaction and communication, autistic persons should be assisted to ensure that they are protected from contracting COVID-19 as they may be unable to communicate to seek medical help or rely their symptoms.”
Also during this time of social separation, because of the possible lack of communication skills, individuals with autism are also considered a group susceptible to gender-based violence as they may not have the ability to report abuse. Mkize points out: “children with autism may not understand what abuse is.” The non-speaking person with autism is at a higher risk of all forms of abuse due to the inability to communicate with others.
There have been many unanticipated consequences due to lockdowns. For instance, the parents of children with autism no longer have the help of speech, physical, occupational and the other therapists needed to assist their child.
Mkize states: “Just missing one month of therapy will have a major impact on our autistic children. We need to begin exploring ways of how these gaps are going to be addressed once the lockdown has been lifted.”
The importance of is not just confined to the United States, this seems to be a global concern, as Mkize emphasizes: “To reiterate the UN Secretary General’s Words ‘” The rights of persons with autism must be taken into account in the formulation of all responses to the Covid-19 virus.”’
This is an extremely complex topic and it is difficult to cover all aspects of autism, my only hope is that by writing this I have caused people to begin to think about those who are easily overlooked.
Below are some of the many resources I discovered on line and perhaps by sharing, one or two may be of benefit or relevant to the readers.
Autism Support Network. (2020). Autism and coronavirus (COVID-19). Retrieved from: http://www.autismsupportnetwork.com/news/autism-and-coronavirus-covid-19-993087
Mkhize, Hlengiwe. (2020). OPINION: Autistic persons vulnerable during Covid-19 outbreak. Retrieved from: https://www.health24.com/Medical/Autism/News/opinion-autistic-persons-vulnerable-during-covid-19-outbreak-20200402
Motokane, Christine. (2020). One Reason the COVID-19 Pandemic Might Be Extra Challenging for Autistic Adults. Retrieved from: https://themighty.com/2020/04/coronavirus-pandemic-autism-routine/?utm_source=yahoo&utm_medium=referral&utm_campaign=in-text-link
University of North Carolina. (2020). Supporting Individuals with Autism through Uncertain Times. Retrieved from: https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times
Autism Support Network log. Retrieved May 2020. Retrieved from: http://www.autismsupportnetwork.com