Unmet Needs During the Pandemic

By Lisa Morgan M.Ed. CAS

**Content warning: Suicide

Crisis supports for the autism community are sparse.  Autistic people need support specific to their way of thinking and understanding the world.  This often differs from the type of support available for the general public.  Thankfully, there is an existing research study published in Molecular Autism that we, autistic people, can use to help ourselves now, in real time, as we need it during the pandemic.

This research can help guide us in how we can take care of ourselves and our loved ones as we experience the unexpected changes in the world.  The immediate changes we were unprepared for in all aspects of our lives can be individually traumatic.  Processing the experiences as they happen can prevent trauma from developing into a more substantial problem like PTSD.

The title of the study is “Risk Markers for Suicidality in Autistic Adults”, Cassidy et al. (2018), and it suggests two unique risk markers for suicidality among autistic people: camouflaging and unmet needs.

Camouflaging is a coping skill used when socializing.  Autistic people modify their behavior during social interactions to ‘fit in’.  Camouflaging may not be as pressing a difficulty right now due to being quarantined away from people. While there may be some camouflaging during video calls /meetings, it has a set time with a beginning and end, doesn’t last too long, and is being done in the safety of home at this time of being quarantined. Thus, the cost of camouflaging may be lessened and self-care can be done immediately in the comfort of the home environment for most people.

Unmet needs, on the other hand, is a substantial difficulty for autistic people during this time.  There have been many immediate, unexpected daily living changes leading to needs being unmet.  For autistic parents, children are home and suddenly needing to be homeschooled.  In the work environment; the place, time, and even type of work may have changed.  For advocates; speaking engagements, conferences, and trainings have been cancelled or postponed. The changes have also resulted in either a lack of, cancelled, or changed support system. As well, there are certain items that help keep autistic people regulated such as food, drinks, and activities that are not currently easily accessible.

Autistic people living independently, who struggle with executive functioning, have suddenly found that the way they are used to taking care of themselves, their homes, financial responsibilities, and other daily tasks have all unexpectedly changed.  There is no longer a meaningful schedule to follow and very little energy to produce a new one quickly. All of this leads to even higher anxiety and confusion, often on a minute-by-minute, situation-by-situation basis.

Unmet needs is a unique risk marker of suicidality for autistic people that must be taken seriously at this time.  Due to high anxiety, executive functioning struggles, an inherent aversion to change, and less support, autistic people are even more vulnerable right now.  Many autistic people may not even realize how much they are struggling because of either disassociating (a coping mechanism) or alexithymia (the inability to identify or explain emotions).  This combination of unmet needs and not realizing how overwhelmed a person may be is dangerous.

What can be done?

Armed with the knowledge of unmet needs being a unique risk marker of suicidality, autistic people can help themselves first through self-care and being more aware of changes in either their thoughts or physical bodies indicating strong emotions and anxiety.  In an effort to stay regulated, autistic people can try indulging in something they are passionate about, being kind to themselves, meditating to stay calm, and using individual coping skills.

Autistic people are creative and can use that strength to develop ways to meet their own needs or to guide others in helping them.  Try to be flexible.  Take care of and help yourself with the same passion you help others.

Autistic people can also stay in touch with their friends as much as possible.  Withdrawing might feel safe and comfortable when autistic people are overwhelmed, but it may also be the worst coping skill to utilize during these difficult times.  Try to avoid withdrawing, even if, as an autistic adult, you only interact with one, safe, trusted person. The important part is to keep interacting.

Second, friends and family of autistic people can try to be more aware of what your friend or loved one is experiencing and be supportive of their needs. Some examples are: helping them to make new schedules as soon as possible, encouraging adjustment to new routines, or finding alternatives to their preferred foods, drinks, or other needs.  Stay in touch with your autistic friend or family member and listen, really listen to them.  Reaching out for help is a social skill.  During times of high anxiety and dysregulation, skills previously mastered can regress.  Remember, above all, kindness matters.

Thirdly, to professionals of autistic people: try to keep up the same level of support or more if possible.  Investigate any changes in their thought patterns, speech, or lack thereof.  Ask direct questions instead of politely beating around the bush.  Now is not the time for pleasantries.  It’s the time to stay focused on what your client needs and to be receptive to what they are saying to you.  If an autistic person misses an appointment, do not assume they are ok and just forgetful.  While keeping within healthy professional boundaries, try to find out why an appointment was missed and if they are still ok.

In conclusion, research has shown unmet needs are a unique risk factor for suicidality in autistic people.  This difficult, uncertain time during the pandemic has produced immediate, unexpected changes in all areas of life for autistic people. There are many unmet needs.  Hopefully, autistic people themselves, their families and friends, along with the professionals in their lives can all work together to help navigate this time of change and unmet needs as safely as possible.

If feeling suicidal or just overwhelmed and need to talk to someone-

In the US call the National Suicide Prevention Lifeline at   1-800-273-8255

Or Text “GO” to 741741 – the 24/7 Suicide Hotline

Outside the US – go to www.suicide.org a website containing hotline call numbers for many countries around the world.  http://www.suicide.org/international-suicide-hotlines.html

Resource:

Sarah Cassidy, Louise Bradley, Rebecca Shaw, Simon Baron-Cohen Risk markers for suicidality in autistic adults Molecular Autism, Volume 9, Article 42, July 2018

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