Author: Kathy Marshack

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.

1. 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.
2. 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.
3. 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.
4. 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

When you discover that your child or partner has “Asperger’s Syndrome”, it makes you feel utterly helpless. I know, because I’m a trained psychologist, with a master’s degree in social work and a doctoral degree in psychology and I still felt that way about my own daughter who, by the age of 14, was officially diagnosed with ASD.

Being a helicopter parent or codependent partner is a natural outcome of the crazy-making AS/NT world. Our natural instincts are to protectively hover over our loved ones, when they have such a serious disability.

The world has come a long way since my daughter was a teen. In January 2020, the American Academy of Pediatrics released a new report summarizing the latest finding and treatment strategies for children on the Autism Spectrum.

A few important points from the report from Psychology Today:

• There is a continuous rise in the numbers of children diagnosed with Autism.
• About a quarter of children with autism experience a regression in language or social skills (between 18 and 24 months old).
• Effective interventions: address specific autism behaviors and identifies triggers for them.
• It’s important to pay attention to medical conditions that often occur with autism spectrum disorders, but can be treated separately – treating them can improve a child’s quality of life.
• Seek help and plan for the transition between adolescence and adulthood. This is a very important transition for people on the spectrum.

 

The report is underlying the importance of seeking professional help and working with a trained specialist to address specific autism behaviors and identify triggers for them. I put these words in bold to make a point.

Along my 40 years of offering professional help for people on the spectrum and their families, I often had people finding me and reaching out because they wanted the best help available and then going with a cheaper and obscure option because it was easier. I never heard back from some, but others contacted me again after some time passed realizing they’ve done more damage than good to their relationships.

ASD was often misdiagnosed in the past and a general psychologist might not be able to see it. Couple therapy won’t help repair an AS/NT relationship if the partner on the spectrum is not correctly diagnosed. Without this, therapy might leave the Neuro-Typical feeling alone and misunderstood. Depression and anxiety are a step away.

If you have a very expensive electric car and its electric battery malfunctions, would you go to the corner shop mechanic who never touched an electric car before? Of course not. You’d look for a specialist. So why would you risk your relationship with a loved one, that is far more precious than a car, to go to someone who never diagnosed ASD before?

From understanding what triggers an ASD meltdown, how to react to a meltdown and how important is self-care when you are in a relationship with a partner on the spectrum, a trained health care professional with years of experience is vital. 

Please seek specialized help when dealing with a partner/family/friends on the spectrum. You can contact me for a video appointment or search for trained help in your area.

A diagnosis of Autism might still not be enough. Some “Aspies” have multiple problems that make their ASD worse. Either way, you need to know what you’re dealing with, but it’s tough when your partner is terrible at explaining their inner workings. What’s most important is to remain positive. It’s vital to learn to accept your ASD family member as she or he is.

Making your “Aspie” feel confident and secure in your unwavering love and support is crucial and will act as a buffer against negativity. How do you do that? 

If you are not a member of our private membership group, ASPERGER SYNDROME & RELATIONSHIPS: Life with an Adult on the Autism Spectrum, please consider joining us. We are an international community of partners, families and friends of people on the spectrum. We joined together to learn from each other and tackle the daily challenges you have when living with someone on the spectrum. I’m also giving several video conferences and teleconferences every month to offer professional help to all members at an accessible price for everyone.

If you’d like to learn more of the science behind ASD, download a free chapter from my book, Out of Mind – Out of Sight.