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Kathy Marshack News

Who Is Taking Care of the Caregivers?

Wednesday, March 08, 2017


44 million Americans are caregivers of a special needs child or elderly relative or neighbor and they need our family and community support to keep going. Are you one of the 44 million Americans who is the caregiver of a special needs child or for an elderly relative or neighbor? We deeply appreciate the love you show and the hard work you do. We realize that often you’re doing this in addition to working secularly, caring for your own household and parenting your children. Thank you for all that you do!

Being a caregiver is a high stress job. Not only are you dealing with the decline of a loved one, the work is physically, emotionally and financially draining. Many times a caregiver is called upon to perform medical procedures for which they haven’t been sufficiently trained such as giving injections, changing catheters, etc. Plus caregivers work reduced hours or even quit their careers to care for their loved ones.

Recently the New York Times ran an article that helps us to get to know these caregivers better. Here are some of the highlights:

  • Nearly a quarter of caregivers are millennials.
  • Caregivers are equally likely to be male or female.
  • About one-third of caregivers also have a full-time job.
  • About one-quarter work part time.
  • A third provide more than 21 hours of care per week.
  • AARP estimates their unpaid value is $470 billion a year.
  • One in five report significant financial strain.
  • Family caregivers over 50 who leave the work force lose, on average, more than $300,000 in wages and benefits over their lifetimes.
  • Sixty percent of those caring for older family members have to reduce the number of work hours, take a leave of absence or make other career changes.

The demand for caregivers is increasing, while the available number of caregivers is decreasing. Because they’re not getting the support and help they need, caregivers often suffer from anxiety, depression and chronic disease. JAMA reports on a study that shows that caregiving shaves, on the average, four years off their lifespan. And surprisingly, the physical impact lasts long after the job is done. PNAS reports on a study that long-term caregivers’ immune systems are still disrupted three years after their job ends. The NEJM reports that caregivers of patients with long I.C.U. stays have high levels of depressive symptoms lasting for more than a year.

Legislation is trying to ease the burden for caregivers by passing the Caregiver Advise, Record, Enable (CARE) Act. This has been signed into law by Oregon, but Washington State hasn’t adopted it yet.

The CARE Act requires hospitals to:
  • Record the name of the family caregiver on the medical record of the patient.
  • Inform the family caregivers when the patient is to be discharged.
  • Provide the family caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home.

If you are a caregiver, please take advantage of local support groups. Reach out to friends and family and schedule time off. Attend classes and talk with professionals about your demanding role. Become educated so you can perform your tasks well and with no risk of injuring yourself. Mental health professionals can help you learn techniques for managing your stress. If you live near Portland, OR/Vancouver, WA please contact my office and schedule an appointment. I would love to help.

Available Online Resources:

The Eldercare Locator identifies community organizations that help with meals, transportation, home care, peer support and caregiving education.

The Local Area Agencies on Aging connects patients and caregivers to the services they need.


ASD Emotional Sensitivity is Not the Same as Empathy

Wednesday, March 01, 2017


ASD sensitivity isn’t the same as Radiant Empathy, which is the highest level of empathy where you care for others’ feelings without needing reciprocity.John Elder Robison, whose Asperger’s Syndrome was undiagnosed until he was 40 years old, gets a lot of play for his books on his life with autism. His latest book about undergoing transcranial stimulation, "Switched On" leads readers to believe that for a short period of time he experienced empathy. This is simply not true.

Empathy is so much more than being sensitive. In fact many NTs are stumped by their Aspies because they appear to be very sensitive and they might be. Parents make this mistake often with their ASD children. Because your ASD child loves you or bursts into tears when they see a pet hurting doesn’t mean they have empathy.

Empathy is a complex, multi-faceted skillset that I sum up as Namaste – "the Soul in me recognizes and honors the Soul in you." It’s the ability to clearly recognize the other person, while holding constant your own feelings and thoughts. It’s respecting the boundaries of the other person even if you sympathize. You don't confuse their pain or thoughts with your own. Furthermore, the highest level of empathy is what I call "Radiant Empathy," or the ability to care for the feelings and thoughts of others without any need for reciprocity.

John Robison never experienced the state of empathy, but with transcranial stimulation, he was more aware of his own feelings and he was even more unable to regulate them (typical of an Aspie). If you have Radiant Empathy you can regulate your feelings and not run amok.

It takes a lifetime to develop Radiant Empathy because it’s the combination of a healthy brain and life experience. But science will keep trying to discover the components of life as if the sum total of a human is nothing more than the sum of its parts.

We’ll discuss this very important subject at our next TELECONFERENCE: “Sensitivity is not Empathy” on Thursday, March 16, 2017 at 2:30 PM. Our approach won’t be so much from an intellectual point of view but for two reasons…

1) When you better understand that your Aspie is operating in the relationship without empathy, you can more easily find ways to communicate.

2) You may find that you can be freer to strive for Radiant Empathy, which actually makes your life more joyful.

If you’d like to learn more about the science of Asperger’s Syndrome, click on the image below and download a free chapter of my book. And don’t forget to invite the ASD professionals you know to join the special Meetup I’ve created for them…Asperger Syndrome: Continuing Education for Psychotherapists.

 


Don’t be a Casualty of Social Isolation!

Friday, February 10, 2017


Don’t be a Casualty of Social Isolation!Ironically, while we now have the ability to connect digitally with millions of people around the globe, the problem of social isolation is growing. More and more people are feeling loneliness. Not only is this emotionally devastating but it creates serious health issues such as:

  • disrupted sleep patterns,
  • altered immune systems,
  • inflammation,
  • obesity,
  • higher levels of stress hormone,
  • increased risk of heart disease by 29 percent,
  • increased risk for stroke by 32 percent,
  • accelerated cognitive decline,
  • and premature death.

A recent NY Times article shares some disturbing statistics on social isolation:

40 percent of American adults say they’re lonely, which has doubled since the 1980’s.

One-third of Americans, older than 65, live alone.

Socially isolated individuals have a 30 percent higher risk of dying in the next seven years, mainly among those who are middle age.

Socially isolated children have significantly poorer health 20 years later, even after controlling for other factors.

The article includes this interesting observation:

“New research suggests that loneliness is not necessarily the result of poor social skills or lack of social support, but can be caused in part by unusual sensitivity to social cues. Lonely people are more likely to perceive ambiguous social cues negatively, and enter a self-preservation mind-set — worsening the problem. In this way, loneliness can be contagious: When one person becomes lonely, he withdraws from his social circle and causes others to do the same.”

How well do you recognize social cues, such as facial expressions? Do you tend to jump to negative conclusions? Negative thinking is not incurable. There’s much you can do to improve your life. It’s never too late to develop a warm social network. Depression, anxiety, and stress are all issues that you can overcome with the aid of a professional. Contact my office if you live in the Portland, Oregon/Vancouver, Washington area to make an appointment.

Click here to read the entire NY Times article and see how some people are trying to solve the problem of social isolation.

What to Do When Your Asperger Mate Makes You Feel Invisible

Monday, October 31, 2016


What to Do When Your Asperger Mate Makes You Feel InvisibleYou fell in love with your husband because he was kind, attentive and very intelligent. He wasn’t like the other guys you dated. He made you feel special. Now the specialness has worn off, and you feel as if you are living with a robot that has no feelings for you. (This can also apply to a man married to a woman with AS.)

But it is not true! He still loves you, but Asperger's or AS makes it hard for him to convey what is in his mind and heart. Because he can’t read faces or body language well, and because he can’t show you with his eyes or his gestures, a huge chunk of interpersonal communication is lost between the two of you.

You’re holding your breath, waiting for him to come alive with you and share the pleasures of life, but instead you see the years disappear as you getting older. This lack of nonverbal connection that means so much to most of us feels like a rose trying to stay alive on the desert.

You long for the type of bond between lovers that evolves over time from all of those small touches, glances, and whispers that we expect between couples. But it’s not there. Instead you feel invisible.

With their lack of empathy, Aspies fail to send us signals that we are recognized, heard, affirmed, and loved. But after years or even a few short months with an Aspie, the sense of invisibility is hard to shake, isn't it?

Even when we are with friends who do affirm us, or even when we have accolades for our community or career accomplishments, we still feel invisible. We long to belong . . . to be understood . . . to be cared for . . . without doing anything except to BE.

This phenomenon of invisibility is about as hard to shake as other symptoms of PTSD. Remember that PTSD or OTRS (Ongoing Traumatic Relationship Syndrome) is a normal reaction to abnormal stressors. This is why our sense of invisibility is so hard to shake. It’s our reaction to living with a lack of empathy for our very existence.

Our next video conference, How to Shake Your Invisibility will be held on Thursday, November 10th at 9AM PT. If you can’t make it, please check back for future Meetups or book a one-on-one educational session with me. While this is not therapy, you can get a lot of your questions answered. Knowledge is power, so with a deeper understanding of how we became invisible, we should be able to come back out into the Light and Love, where we are meant to be.

Stumped by Your Aspie? How to Translate What They’re Trying to Say

Monday, July 18, 2016


If you’re stumped when it comes to communicating with your Asperger’s Syndrome loved one, here are some tips for translating what they’re trying to say.Communication – this is a topic addressed over and over again when I counsel family members who have Asperger Syndrome (Aspies) and is frequently the topic of discussion at our Meetup (Asperger Syndrome: Partners and Family of Adults with ASD). Having raised a daughter with Asperger’s I understand the frustration many of you feel when you try to understand what exactly your Aspie is trying to say.

If any of you are familiar with Star Trek, you might envy the Universal Translator on board the ship that automatically translates every language and sends the translations directly to the chip implanted in the brain of every officer on the Enterprise. Wouldn’t that be helpful!

While a Universal Translator doesn’t exist, we do have another option: Always speak to the good intention, whatever it is, even if you are not sure. When you get a confusing message from your Aspie partner or child, always assume it makes sense somehow, someway. Trust that there is a good intention behind the message even if is speaking Aspie.

By maintaining a neutral position, you are better able to answer the question, “Why is he/she telling me this?”

When I get stumped by a confusing message from an Aspie, I use the phrase, “That’s right,” in order to bring me to neutral. The phrase reminds me that the other person is “right” in that they have a good intention, which has meaning to them. “That’s right,” also helps me know that I am “right,” in that I am capable of good intentions. You may not always be able to get the message translated, but at least being in neutral puts you in a much better frame of mind for the attempt.

Here’s a simple example. When my daughter Bianca was 8, she wrote me a note about trouble she was having at lunch at school. She grew up around my home office, so she observed that my office manager and I often exchanged written notes (even with the advent of e-mail). If I was with a client, Bianca would leave me a note, so that I would be sure to answer her when I had a break from appointments.

Notes became Bianca’s version of the Universal Translator. Her penchant for writing as opposed to talking with me should be noted. It is a typical Aspie trait to find comfort in the written word—because face-to-face communication requires empathy and the interpretation of confusing non-verbal messages.

So the next time you feel stumped by your Aspie, put yourself in neutral and then ask yourself these questions:

  • What do I know about this person?
  • What is important to him or her?
  • What are their interests, beliefs and opinions?

Then do your best to speak to those things, instead of relying only on your interpretation of reality. If you want to delve deeper into understanding how to communicate with your Aspie check out my book, “Out of Mind – Out of Sight: Parenting with a Partner with Asperger Syndrome (ASD)", you can download the first chapter for free. If you have questions about what you read I’m available for an online Q & A session.

 

How to Cope as our Aspies Get Older

Wednesday, July 06, 2016


Aging in those with aspergers is uncharted waters, so learn how to help them, while at the same time caring for yourself emotionally – 7/14 teleconference.We have so little information on what happens as Aspie's age. (For some helpful hints, read Liane Holliday Willey Ed.D article about caring for her own aged Aspie father entitled, Supporting Elder Aspies.) We have even less information on how to help the NTs who are aging along with them. There are health issues, legal issues and financial issues, but the most profound is the despair that no one understands or can help.

Over the years, our Asperger Syndrome: Partners and Family of Adults with ASD Meetup group has had had many discussions about these mind numbing relationships and how to care for yourself emotionally in relation to a spouse or adult on the Autism Spectrum. In the July teleconference we’ll discuss how to care for yourself as aging moves to the forefront. Disability, health problems, financial security, housing and so much more confront us as we age, but the issues are dramatically compounded when living with an Aspie.

Even if you are young or middle aged, I’m sure you have had fears about what will happen to you or your children if your aging Aspie should deteriorate further . . .or worse if they have to take care of you!

Please, join us in this discussion of how to prepare for this stage of life. You are not alone, even if you think you are. The teleconference, Aging with your Aspie, will be held on Thursday, July 14th at 2:30 PM. Click here to register. You must be a member of the Asperger Syndrome: Partners and Family of Adults with ASD to attend this free, international teleconference.

Read more on my website: Asperger Syndrome FAQ’s.

Have a Family Member with Asperger’s? How to Speak Aspergian

Monday, June 27, 2016


People with Asperger’s Syndrome have their own language – they speak in code words or have an unusual system of speech, but you can learn ways to connect.Have you ever tried to learn a foreign language? It takes a lot of hard work. To be able to think in another language oftentimes takes years of practice. The same is true with learning Aspergian.

Speaking Aspergian is a powerful tool in your relationship with someone who has Asperger’s Syndrome. It's not so much speaking the language of your Aspie as it is understanding theirs. With this understanding, you can neutralize everyone's distress. When you’re detached from the emotional meaning of the communication, it’s much easier to guide the conversation to a mutually agreeable place.

For example, Aspies don't have empathy. They positively hate it when I say this but it’s true. If your Aspie doesn't have all of the elements of empathy, it’s the same as Zero Degrees of Empathy as you well know. Your Aspie may have cognitive empathy, or a rather flat logical understanding of the facts, but they struggle to connect it to the emotional meaning. Or they may be highly sensitive and cry at the drop of the hat, but be unable to speak about their feelings. Or they may care deeply about a social justice or personal cause, but be unable to connect with others on the issue.

Disconnects between emotions and thoughts, no awareness of the intention behind human behaviors, using idiosyncratic words that carry no meaning for others, . . . these methods create a kind of language that can seem impenetrable. Autistic children seem to have a language of their own that no one can fathom. Autistic adults, even our high-functioning Aspies have the same unusual language patterns. Once we break the code, it’s much easier to communicate and relate.

Our next low cost Video Conference will be on the topic: How to Speak Aspergian. It will be held on Thursday, July 7, 2016 at 9:00 AM PDT and again on Thursday, July 28 at 3:00 PM PDT. There are still a few spots left, so if you’re a member of the Asperger Syndrome: Partners and Family of Adults with ASD please sign up soon to ensure you get your spot.

Bring examples of the mysterious language of your Aspie for our discussion. Even if your Aspie uses a different code word than another Aspie, the system they use is the same. But the real goal is more than understanding their code; it is also to reduce distress and find a way to connect with your loved ones.

Asperger Logic vs. Intelligence – Take Back Your Right to be Intelligent in Your Unique Way

Wednesday, May 18, 2016


People with Aspergers are highly intelligent and logical, yet they don’t understand different types of intelligence like emotional intelligence and empathy.Our first Video Conference on the topic of "High Functioning Autism" was “eye opening”, “excellent” and “validating” according to those who joined us. One participant mentioned that these discussions are “giving her a voice and a real perspective”.

I am so thrilled that I’m able to support so many of you in your quest for greater understanding and ways of coping with the crazy making world of Asperger’s Syndrome. I heartily thank all who have the courage to reach out and connect in the Asperger Syndrome: Partners & Family of Adults with ASD Meetup group.

It’s easy to confuse logic with intelligence. High Functioning doesn’t mean that your Aspie is somehow superior. They’re just as autistic as any other autistic when it comes to empathy, meaning that they have zero degrees of empathy. But they often have an abundance of logic to convince us that empathy is overrated.

First, remember that even though our Aspies may be logical, they may also be irrational. For example, they may logically deduce that your argument or position lacks merit because you cannot prove your point. Or they may deduce that since women earn less than men, they should pay all women less for their services. It’s not rational to conclude that you are "wrong" just because you don’t present sufficient evidence to convince them. Likewise, it’s irrational to argue that women should earn less because over the decades they have.

Second, remember that intelligence comes in all shapes and sizes. You may be emotionally intelligent or artistically intelligent or socially intelligent or intuitively intelligent, etc. You need not possess mathematical/logical intelligence to be intelligent, though this is the type of intelligence that many of our Aspies value.

Third, it's time to take back our right to be intelligent in our own unique way.
Empathy is an incredible gift to possess. We use it in myriad ways to navigate the social world. When you learn to love and appreciate yourself fully (including your capacity for empathy), then interacting with our Aspie loved one becomes more stress free.

The next video conference takes up where we’re leaving off in the discussion of High Functioning Autism. If you’re a member of Asperger Syndrome: Partners & Family of Adults with ASD group, you’re invited to the next free TeleConference where we’ll be discussion: Logic v. Intelligence. It will be held on Thursday, June 2nd at 2:30 PM PDT and again on Thursday, June 28th at 4:00 PM PDT.

Are you a neurotypical (one who doesn’t have Asperger’s) and you’re living in an Asperger home and haven’t joined Asperger Syndrome: Partners & Family of Adults with ASD yet? It’s a free worldwide Meetup where you find support and understanding. Why not join us today?

Another option: If you would like more one-on-one counseling and you live near Portland, OR/Vancouver, WA please contact my office and schedule an appointment.

Living with an Aspie – How to Find Freedom from Blame and Shame

Wednesday, May 04, 2016


We often feel shame when dealing with our Aspies, because they can't put themselves in our shoes, they tend to find fault or blame us for misunderstandings.When you’re living in an Asperger home, you may often end up feeling that it’s all your fault, that you should have better control of your home life and family relationships. We often feel shame when dealing with our Aspies who lack empathy. Because they can't put themselves in our shoes, they tend to find fault or blame us for misunderstandings.

Why do those with Asperger’s Syndrome blame others?

This is a natural byproduct of an empathy disorder, unless the Aspie develops a strong moral code. It’s harder to take responsibility for a misunderstanding (or other interpersonal breakdown) when you don't have empathy to compare yourself to another. As a result Aspies can become quite manipulative, narcissistic and engage in the Blame Game.

Furthermore, we NTs may also be blamed for overreacting to our Aspies. I know I used to be called on the carpet for not "controlling" my Aspie daughter's public meltdowns. I was accused right on the spot of being a "bad" mother.

That's where the shame comes in. If you are blamed long enough, and you have made a mistake or two in the relationship, you might take on responsibility for too much and feel Shame. Shame is also a natural byproduct of living daily with a blaming spouse or partner or acting out Aspie child.

What can you do?

If you’re a member of Asperger Syndrome: Partners & Family of Adults with ASD group, you’re invited to the next free TeleConference where we’ll be discussion: Freedom from Blame and Shame. It will be held on Thursday, May 12th at 2:30 PM PDT.

Please join us for a rousing discussion on how to free yourself from Shame by breaking up the Blame/Shame Game. It's not enough to understand what's happening to you. You need strategies to take back your life and to know how truly wonderful you are!

Are you a neurotypical (one who doesn’t have Asperger’s) and you’re living in an Asperger home and haven’t joined Asperger Syndrome: Partners & Family of Adults with ASD yet? It’s a free worldwide Meetup where you find support and understanding. Why not join us today?

Another option available to you: If you would like more one-on-one counseling and you live near Portland, OR/Vancouver, WA please contact my office and schedule an appointment.

How to Handle the Loneliness of a NT/ASD Relationship

Friday, April 15, 2016


The loneliness you feel in your relationship with one who has Asperger’s (ASD) is heartbreaking, leaving you emotionally bereft, but there is help and hope…I often hear from new members of our Asperger Syndrome: Partners & Family of Adults with ASD group, or those who have found my books, that they finally don't feel so alone. They’re stunned that someone knows what they live with. They tell me that the stories in my books are nearly identical to their own. And they wonder how that’s possible!

It's possible because I know only too well the loneliness of life with Aspies. When I was first coming to terms with the loneliness and how to take back my life, there was no one to help me. There were no books, no knowledgeable psychotherapists, and not even friends anymore. Not only was I alone and trying to parent two children with special needs, but I was dragged into a hostile divorce that intrigued the community (e.g. more than once my situation was front page news).

The main thing that saved me was writing my books. I knew that there had to be others like me. I had a few clients with the same dilemmas too. When I sat down to draft my books, I felt free. Finally I was freely expressing myself about the convoluted life of ASD/NT relationships.

The second thing that saved me was starting the Asperger Syndrome: Partners & Family of Adults with ASD group. Inviting all of you into a worldwide community has made all of the difference to me. We come from all walks of life, from every continent. We speak many languages and celebrate a variety of cultural traditions. Yet we instantly understand each other when we share our stories about ourselves and our Aspies.

If you’re a member of this group, you’re invited to the next free TeleConference where we’ll be discussion: How to handle the loneliness. It will be held on Thursday, April 21st at 2:30 PM PDT. Join us as we break down the loneliness barriers. Come prepared to share your successes and your dilemmas. After all we’re a community and we’re here to support you and to gain support.

One recent member was helped so much by this group that she said: “Thank you for creating this group. Since learning about ASD, my husband has done a lot of work on his emotional awareness and responsiveness, in therapy and on his own. We're doing well! Thanks again for the support.”

If you’re a NT in an Aspie relationship – whether with a spouse, parent, partner, or child – know that there is a community of people waiting to welcome you with open arms. Join the Asperger Syndrome: Partners & Family of Adults with ASD Meetup group and start getting acquainted today.

Read more on my website: Asperger & Marriage and Asperger Syndrome Support.



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