Social Isolation Isn’t New for Us.
Like everyone else, I am slowly coming to terms with my new life of isolating myself through social distancing, staying home, washing my hands constantly, and ordering all my groceries on-line. Among the many safety precautions, I have heard recently from radio show hosts, newscasters, politicians and scientists, I am considering if I should wear nitrile gloves when I pick up my mail, and then store it outside for three days, before I open it. Apparently, the virus can last for 72 hours on many surfaces. Sheesh! There is so much to learn and quickly.
The Covid 19 Pandemic has me a little upside down and backwards. I’m used to handling emergencies, but this one is confusing isn’t it? Even more so, when we NTs have to manage our autistic family members. Yes, I know many autistics will hate that word, “manage.” But those of us who live with them know full well that this is exactly what we have to do. It’s life or death.
Our lives, as those who love adults on the Autism Spectrum (and children too) have taught us to take charge during emergencies. We learned long ago to put our needs aside in a split second when there was an ASD meltdown or ASD Empathy Dysfunction in parenting. And because there are plenty of these emergencies in homes where autistic people live, our needs are put aside often enough that we NTs are very familiar with social isolation. We have experienced it for years.
Ironically, we already know a lot about social isolation. What we are working on is self-care in the face of autism in the family. We are trying to take back our lives and be authentic when we can. Then along comes a world pandemic and we are thrown back into our role as Super-Hero Care Giver. This blog is dedicated to those Super-Heroes, so that you have a wee moment to reclaim your life amid the chaos.
Super-Heroes United.
I was delighted today at a teleconference dedicated to members of our support groups, on Meetup ( https://www.meetup.com/Asperger-Syndrome-Partners-Family-of-Adults-with-ASD/ ) and ASPERGER SYNDROME & Relationships: Life With an Adult on the Autism Spectrum (www.asd-ntrelationships.com). Delighted? Yes, because this amazing group of people came together to offer hope, support and problem solving for other NTs who are struggling to keep their families safe. It’s not easy handling our own fears of Covid 19, without also having to calm the fears of our ASD loved ones — or try to keep them safe from their own thoughtless impulses.
(By the way, the call was recorded for members. If you want to listen again, please go to the websites above. If you are new to our group, please join).
Among the stories shared, we heard members struggling to get their ASD loved ones to simply cover their mouths when they cough, or to wash their hands (all over their hands). Some NT members work in the health care field and have to be extra cautious when they come home from work, to change clothes and clean up. However, their ASD partners think nothing of exposing the family to their work contacts. There were many examples of ASD behaviors that were frightening to our NT members; such as continuing to go to the public gym, or taking the risk to visit a sick friend.
Still others on the call shared their anguish for being blamed by their ASD partners for being overly dramatic about the risks of Covid 19. Or the exact opposite, where the ASD partner becomes so consumed with emergency preparedness that they can’t see the forest for the trees, to balance preparedness with quality family time.
How can they not see the dangers and that we are trying to help? Why can’t they be supportive and respectful during such a major crisis? Instead their ASD anxiety shoots through the roof, making it next to impossible to process what is best for others.
On the other hand, this group of NTs got it. Immediately. With each caller who spoke, the entire group got it. One by one people came onto the call and spoke of their support and admiration for each other, in this very tough time.
Tips to Stay the Course with Autistic Loved Ones During the Pandemic.
Members on the call were also freely offering advice on what works for them. As NTs in relationship with ASD family members, we do need extra special care. After all who else is there to take care of the family, if we don’t take care of ourselves first?
This list is in no particular order. Take what works for you.
- Breathe. Apparently for us take charge Super-Heroes we may suppress some of our normal bodily functions in order to make ourselves quickly available for any emergency. You will be much more effective if you breathe and stretch.
- Shake. There is a growing body of evidence that shaking our bodies does wonders for our immune system. It also relieves Post-Traumatic Stress symptoms. Since massage is out of the question, try shaking your arms and legs. Go for a walk, or ride your bike where it is safe.
- Vitamins. Take your vitamins, not just your usual multi-vitamin, but in this time of incredible stress, increase those supplements that support your immune system. Check with your integrative medicine specialist. Vit B-12, Vit C, and Zinc are my favorites.
- Talk. Talk to each other. Share yourself and your stories in our forums. Where else will you find others who know exactly what you are going through? We may have to adhere to guidelines for social distancing out there, but online there is no limit to whom you can “touch” and connect with. You are not alone with us.
Thank you all very much. You are Super-Heroes.
Dr. Kathy
![Going Over The Edge](https://kmarshack.com/wp-content/uploads/2024/11/Going-Over-The-Edge-450-min.jpg")
Thanks for the post on dealing with COVID 19 with ASD spouse.
After a couple of bumpy weeks, we are now in a groove in Western Washington, but before that, oh my goodness…. Reminding him to wash his hands, but he was on board with changing out of his work clothes once he came home. So that was a plus. But he’s pretty much only able to take care of himself, so I’m in charge of everything else- like disinfecting the house. This is just a continuation of how it has been for many years.
Thank you Dr. Kathy for addressing this issue and helping to keep us sane under even more difficult circumstances. Thanks for your comment Kay. I can so relate to your Aspie being able to only care for himself while you take care of everything else! I’m in that same boat with you.
Thank you for addressing this issue. Yes, we NT wives live with a kind of social isolation 24/7. This COVID pandemic has brought about a whole new set of frustrations with my Aspie. Since he “always believes he’s correct” and the rest of the world doesn’t know what they’re talking about, he’s taking the entire issue of self isolation, wearing of masks, etc with a grain of salt. He refuses to wash his hands unless I absolutely make a scene. He does volunteer work at our retirement community where mgmt has mandated the wearing of masks for deliveries. After initially refusing to wear one I had to get involved to ”explain him’ to mgmt. They made it clear he ‘must’ wear one or not participate in volunteer deliveries. He wore one for a minute or two with one food delivery but today has left for a mail delivery with NO mask again. He thinks everyone’s over reacting – and as usual, I’m in the middle trying to explain his actions to everyone. I’m sick of always covering for him and having to answer ‘why’ he behaves so irresponsibly. Thanks for addressing this issue
Audrey, I recognized the same pattern of covering up or apologising for my husband’s ‘cock ups’. I stopped it, recognised it was codependent and began to ask him to apologise or phone people and take responsibility for his behaviour. Guess what- a lot of his behaviour has altered because he now hears from others what effect his actions has on them. When the kids complain about his inappropriate behaviour I ask them to speak directly to him. Slowly things are changing. I suspect his motivation comes not from being sorry for his behaviour but hearing he is wrong. (He hates being wrong.)
I refuse now, to cover up or take responsibility for him or his behaviours.
Many of the partners of ASD people I meet are in the helping professions and as a result, find it easy to fall into enabling others to perform at a low level.
We must protect our own hearts and minds, just so we can survive the onslaught.
Months later into COVID, my husband caught it, ostensibly from work (he’s a health care worker). It was frightening to me because he first denied (in spite of a positive test), convinced that it was only a cold.🤦♀️ He was told for us to quarantine for 14 days, but I checked the CDC and realized I could isolate him! This was a battle at first- I felt as though I had a difficult even rebellious child! I was adamant and reinforced the isolation but there were breaches… I got COVID, and he was no help, sadly as usual. (It’s so hard living with a spouse who can only take care of himself… ) Our sons checked via text or phone almost every day! I must have had less of a “viral load” because I didn’t have it in my lungs, thankfully!
I realized that in an emergency I will always have to make decisions about my care, without support from my husband of 40 years on the 20th…😢
There are people who are violent alcoholic drug users or have other odd behaviours which make them worrying to live with, yet we have to live with them to keep things together financially. The strain is the pretence we have to create to protect ourselves from being rejected socially. Families see the odd behaviour the most intensely. Best to try not to see everything. Let everyone take responsibility for their own behaviour because they won’t stop. As long as we aren’t cleaning up their mess.
It is tiring to lead a normal life when living with odd people. C19 isolation is a rest from the outside world.
‘Educated’ by Tara Westover, is a shocking, true example of delusion, insanity and family violence. It is about how children think it is normal when they grow up with odd people. Worth reading.
I tell myself not to take life seriously anymore and not worry or care much about anything. It can’t be taken seriously.
NZ doesn’t have C19 atm but when I go out to meet people I return with a sore throat, so we should wear masks.
Isolation is a rest to be enjoyed.
It is lonely though. Does this make sense to any of you?
Yes, Sue, you do make sense. But do be careful not to slowly disappear as you accomodate the trauma of this life.
Thanks, Barbara, for this wise response. I have not quite gotten to this point but am aspiring to! My husband has a PhD, and always must be right. I have been explaining him to my family and friends for years, and have decided to just stop. Harder than it seems! We have been in lockdown together and recently lost our power to an ice storm so were literally stuck together in the cold. He became deeply depressed, and yet doesn’t seem to worry about how I feel (shock, shock). Nobody complains to me about his behavior, but I do think people avoid us as a couple. Pre COVID I was able to spend a lot of time with NT friends and family, but that hasn’t been possible for quite a while. Thanks again.