Those of you who have been following me may have noticed that I am doing a video conference series that is starting next week. It’s called, “Why Do ‘Aspies’ Always Say No?”. You can find a bit more about this conference series from my video:
This question of why do they always say “NO!” comes up a lot in our international MeetUp group “Asperger Syndrome: Partners & Family of Adults with ASD”. Our “Aspies” are struggling to follow our line of reasoning. Sometimes they say “NO!” and other times they ignore us completely. When we are ignored as we try to talk, we feel insulted and not worthy. It usually signals that something is wrong. Those on the Spectrum don’t often respect the social etiquette. Situations like these create the perfect storm for miscommunication and hurt feelings in a NT/AS relationship.
People with “Asperger’s” have great difficulty with change or spontaneity more than Neuro-Typicals. A new idea, a new event, a new plan to go on a family trip creates tension and complicates the decision-making process. “Aspies”need to properly examine each idea, in great detail and how it fits into the context. They need to get past the novelty and build a new paradigm. For them, your idea requires an entire process of thinking.
Instead of discussing your idea, their first instinct is to say “NO!” or “I’m not interested”. This buys them time to get away from our demands and to protect themselves from confusion.
They say ”NO!” because it is comforting to be in charge when so much of their interpersonal life they do not feel in charge. I am sure our members can share many other examples of when their “Aspies” say “NO!”.
What can you do? How can you get around their reflexive action to put us off, and shut us down?
If you are persistent and patient and unwilling to give up, your “Aspie” may come to trust you enough to agree to something, even if they have no idea what you are talking about. Of course, then we have to find a way to cope with the eye-rolling and the classic criticism that “You always get your way.”
I will be talking extensively about ways around their first “NO!” and what you can do. If you are interested to attend one of the calls from my video conference series titled “Why Do ‘Aspies’ Always Say No?”, please register on the new membership website “ASPERGER SYNDROME & RELATIONSHIPS: Life with an Adult on the Autism Spectrum”. The dates are as follows:
Why is it that a conversation with someone on the Autism Spectrum can go from just a little confusing to fraught with stress? Many Neuro-Typicals are stunned that the simplest conversation goes into a “black hole.” You can’t predict how they’ll react. Whether your “Aspie” rants, and melts down into a rage or torrent of tears, or gives you that blank look and walks away, you feel rejected and confused and hurt.
Unfortunately, meltdowns usually have to run their course. These tantrums are usually happening because your ASD child or partner feels extremely strong emotions and reacts just as extremely.
What can you do when confronted with a meltdown in public?
Screaming will only escalate the situation
As a mother of two children, one of them on the Spectrum, I can tell you that I’ve been there. Your first reaction, especially if the meltdown is happening in public, will be to raise your voice and get stressed. While you need to be firm when you say “No,” telling your child to shut up on an angry tone won’t make the situation go away. I’m sure by now you notice this too. Instead, try to be calm. You are in control of your feelings and actions and you are a role model for your child as well.
Focus on finding solutions
This might not be an option every single time, but when possible instead of focusing on the negative and on the problem, try to find a solution. It’s easy to get pulled into this screaming world and have a contest with the loudest reactions. Put out the fire by thinking of a positive way to get out of the situation and come up with an alternative solution. You are in charge, not your child.
I’ve written a blog post specifically about avoiding ASD meltdowns during your holiday and you can read it here. I’m giving you 10 tips to help your ”Aspie” cope with holiday stress, whenever it’s about travelling abroad or your Christmas holiday. With their normal routine disrupted, it’s important to prepare them well in advance to minimize their anxiety and potential meltdowns.
Divert their attention
Our“Aspie”loved ones want to help, so ask for their help. Give them space to manifest self control and then try to distract them from their problem with specific tasks. If you are in a restaurant, ask for help coloring. If you are on a bus, try to count all the red cars that pass by.
Instead of shutting them up, enlist their help and give them a chance to be helpful and reduce their anxiety with specific jobs. Don’t forget to praise them for a job well done.
Of course, I was flattered to get so many positive responses to my latest blog, Empathy: “Asperger’s” Style, especially the praises such as:
“ ‘wow’ thank you! that post felt like a tall glass of water after 10 years in a drought.”
“Expecting someday you will be nominated for a NobelPeace prize.”
I want you to know that I hear and accept the praise. I couldn’t have written this blog or any of my books without the help of those of you living this life with an adult on the Autism Spectrum. However, I also know that for some inexplicable reason I captured the essence of Empathy Dysfunction (EmD), and that discovery has made all of the difference for many of you.
But after getting my ego out of the way, and reading some more responses, I realize that there is something greater going on here among my readers. There is a theme, a deeper meaning — something greater than the sum of the parts, if you know what I mean. I had to clear my ingratiating self-absorption out of the way and allow my empathy to expand, to grasp the essence of what my readers are trying to tell me.
Empathy is to see and be seen.
When I read the response from Diana (see next section), I had a flash of insight — at the same time that I saw the face of Hugh Jackman. The pieces of the deeper meaning started to fall into place.
Last year (2018) I read this Twitter post from Jackman, and it brought tears to my eyes, then and now. It perfectly represents the essence of empathy, as the actor expresses love for his wife on their anniversary:
“I believe in life we need to see and truly be seen by the most important people in our lives. Deb, from day one, we had that. 22 years later . . . it only gets deeper.”
Jackman’s sweet dedication to his wife shows that he has empathy. At the risk of chopping up the eloquence of his message, let me analyze a bit. Jackman’s Tweet is empathy in action. He recognizes it as a reciprocal process of “to see and truly be seen.”
Further, Jackman states that, “I believe in life we need. . .” this process I call empathy. Without it we suffer, as do many Neuro-Typicals (NTs) in relationship with an adult on the Autism Spectrum. This need is not foolish or superficial by the way, but a deep-down human need that scientists have recognized for decades.
Jackman goes on to acknowledge that this seeing (empathy), and his love for his wife, “. . . only gets deeper over time.” In other words, empathy (to see and be seen) fosters love, which is a dynamic, ever changing process of social exchange — that has the capacity to grow deeper over time.
Love is not a noun.
When I read Diana’s response, it was clear as crystal. What my readers felt when they read my blog is incredible relief — and pain. They felt seen for the first time about what it’s like to live without empathy in their most precious relationships. And they felt sadness that they will never find this type of connection with their ASD loved one. From Diana:
“This struggle to convey all that empathy is seems similar to my struggle to define ‘relationship,’ ‘healthy relationship,’ and ‘relationship repair’ to my husband. I just can’t get it across. I am left believing that we are like 2 species with different needs.”
Instinctively I responded to Diana’s comment on the blog page:
“Hi Diana. The problem with explaining “relationship” is inherent in the word. It’s the same with “love.” These two words are what linguists call nominalizations, or taking an active, process word and turning it into a noun. Better words are “relating” and “loving.” “Aspies” do not understand nominalizations as we do. We automatically see “relationship repair” as an alive and ongoing process. The same with “love,” . . . a never-ending process of give and take and growing deeper into each other. As long as “Aspies” see dynamic processes as merely nouns, they will fail to pick up the pieces of a broken moment or a broken relationship.”
Another way to look at this is that love without empathy feels empty to NTs. The love might be in the heart of your “Aspie,” but they are holding onto it as if it is a thing, or a possession, or a noun with nothing attached. The “Aspie” doesn’t know that love is not a thing at all, but an ongoing, ever-changing gift-giving experience.
Empathy is a super-power.
So how do we NTs survive in these relationships without true empathy? I hope that you survive by understanding your “Aspie” better, for the kind of love they know, even if it is a nominalization. I hope you take back your life and never settle for less than you deserve and know to be true. I hope you come to accept that your incredible super-power is your empathy and that it is a gift you give to your “Aspie,” even if they cannot give it back.
I think of empathy akin to what physicists call “Chaos Theory.” Like “Chaos Theory,” empathy has a pattern. It is logical. There are rules that are clearly definable to those of us with empathy. Yet — because empathy is a whole, where every small piece represents the whole — you just never know when or where it will emerge — but emerge it will when the right elements come into place.
(Please let me know what you think of this short blog in response to my last blog, Empathy: “Asperger’s” Style. I’d really like to hear from you.)
Autism is defined by a lack of social reciprocity.
Empathy is a tough concept to explain to Neuro-Typicals (NTs), and those on the Autism Spectrum alike. I have made several attempts to define and describe empathy in my books. In fact most recently I published a book on what a serious lack of empathy looks like, “WHEN EMPATHY FAILS: How to Stop Those Hell-Bent on Destroying You.” But in spite of my efforts I still get readers who find it confusing at best, or even hotly disagree with me. Mostly my NT readers give me an “Ah Ha,” when they recognize that Empathy Dysfunction (EmD) is at the heart of their relationship problems.
This time I thought I would look at the concept of empathy from the polar opposite view, from the perspective of someone who is autistic. According to the DSM-V (“Diagnostic and Statistical Manual of Mental Disorders”) autistics do not have empathy, or as defined in the manual, they lack in “social reciprocity” and other interpersonal communication skills. Yet time and time again, “Aspies” assert that they have empathy. In fact, some are even angry that I would suggest otherwise.
In a response to one of my blogs, an ASD woman wrote:
“I have Aspergers and am highly sensitive and empathetic to the right people. It’s just that I know neurotypicals are generally jostling for social position or running on an impenetrable and often very obvious and boring program. Why should I be empathetic to that? They are not empathetic to my need for autonomy and to live in a healthy world.”
There is a lot of anger and hurt revealed in her comment. Clearly she feels marginalized by the Neuro-Typical world and she is fighting back. But there is a lot more. I want to take my time to unpack the meaning of her words because I think it will clarify what empathy is and is not.
Empathy is like an orchestra.
Is it sensitivity, intuition, kindness, or compassion? No, I don’t think so, even though those are elements that contribute to empathy.
Is it consideration for others? Or perhaps, a sense that you should give someone space to be just who they are? Maybe, but that certainly doesn’t explain it all.
How about those people who say they are an “Empath,” because they sense the “energy” in the room and seem consumed by it? Nope, that is not how I would describe empathy. It is so much more.
There are so many parts to empathy that if you are missing just one element, you don’t really have empathy. It’s a sophisticated amalgam. I sometimes compare empathy to an orchestra that is composed of the musicians, the composer, the arranger, the director, the soloists, the concert hall, and the audience. There is some ineffable quality of a concert that just “comes together” with the right mix. We all have had this experience. Aren’t you in awe of the concert when the music reaches deep down into your Soul — and you are inspired?
Empathy is more than the sum total of the parts.
Another simple way to look at empathy is that “Empathy is greater than the sum of it’s parts.” Empathy includes all of the adjectives above, but it is more. Empathy is the ability to hold onto yourself (your thoughts and feelings) while you acknowledge the thoughts and feelings of the other person. Further, it is the ability to add to the mix of emotions and thoughts, words that describe both what is going on with yourself and the other person. It is the ability to take all of this information and formulate a plan that creates a win/win outcome. Both you and the other feel understood and appreciated. And yet even more, empathy is the ability to process all of this information in milliseconds.
“Aspies” cannot do this. They may have many of the qualities of empathy as I have described them, but they struggle to integrate the parts into the whole, in the right time, with the right response for the situation. This profound disability leaves Neuro-Typicals not only feeling misunderstood, but feeling rejected — even bereft.
Empathy is so much more than sensitivity.
“I have Aspergers and am highly sensitive and empathetic to the right people.” [the first sentence from my blog reader].
Many “Aspies” believe they have empathy because they are sensitive, or compassionate, or kind. In fact, they usually tell me that they are so sensitive that they just can’t function in a room with chaos, or the roar of the music, or more than one person speaking at once. On the other hand, true empathy is the ability to function in all of those conditions, while maintaining one’s cool and being there for others.
I had an ASD (Autism Spectrum) Scottish marriage and family therapist tell me that he accepted that he has no empathy, but he felt it was irrelevant. Instead he teaches his couples that the Neuro-Typical (NT) should do the work of understanding his or her ASD partner. This therapist maintains that the autistic spouse needs so much more understanding than the NT.
Choosing who should have empathy, or with whom to be “empathetic” is not empathy. Empathy is a neutral skill. It is the ability to integrate the parts of the orchestral performance into a whole that is much more than the sum of the parts.
Missing the subtle nuance of communication.
“It’s just that I know neurotypicals are generally jostling for social position or running on an impenetrable and often very obvious and boring program.” [the second sentence from my blog reader].
Without the ability to empathize, or integrate the parts into a whole, it is no surprise that “Aspies” develop some interesting ideas on what empathy is. I want you to think about how difficult it might be to understand empathy, when you have never experienced it. Not easy, is it?
My blog reader thinks empathic communication among NTs is “jostling for social position,” and “. . .running on an impenetrable and . . . boring program.” I can understand completely that she misreads the intentions of NTs. Empathy isn’t always so easily observed because it comes from an inner knowing. Because empathy skills are not strong for “Aspies,” they rely on cognitive observations, which miss the subtle nuances — and the intended meaning.
Here are a few examples of how some “Aspies” described their NT partner’s empathic behavior.
“When she talks with me it’s like confetti. I just wait for the confetti to fall to the ground. When she finally gets to the point, I listen.” From an “Aspie” husband.
“My wife gives a lot of back story until she gets to the point. I am a very good listener so I try to follow all of this back story, but I usually get lost. I never know where she is going.” From an “Aspie” husband.
“In order to make my writing more interesting to Neuro-typicals, I have learned to add all of these extra words to my manuscript. It’s like they need these curly-Qs, for some reason.” From a woman who writes fantasy novels.
Empathy is definitely not treating another person’s words as if they are confetti, or back story or curly-Qs — or impenetrable and boring, but at least these “Aspies” are trying to connect. They know the NTs in their lives want more and they are making an effort to figure it out. Nevertheless, empathy is still a mystery to them.
Why“Aspies” feel marginalized and disconnected.
“Why should I be empathetic to that? They are not empathetic to my need for autonomy and to live in a healthy world.”
Can you blame this woman for being angry? She wants acceptance for just who she is. Without the ability to read between the lines, she has spent her lifetime being misunderstood. Good intentions don’t come across well in the NT world, when they are missing the empathic touch, something she calls “impenetrable and . . . boring.”
We NTs believe that all people have empathy, or that they should. When the “Aspie” misses an important social cue, or puts their proverbial foot in their mouth, we are aghast. No one helped us understand what autism may look like in an intelligent, quirky, high functioning individual. So, we fail them. We dismiss their behavior as rude or ignorant. We can do better.
On the other hand, “Aspies” need to accept that they do lack empathy, and that this is unnerving for NTs. For example, my former spouse made an off hand comment one day, in front of our guests. We had people over to play board games. At the completion of one game, Trivial Pursuit, I won. My then spouse looked astonished and said, “Wow! You really do know stuff. I always thought you just pretended to know things.”
I found his comment offensive and my guests were unnerved. In fact, because he lacks empathy and a theory of mind, he had no awareness of what I know or do not know. He only knows what he knows. He did observe that I won the game fair and square, but he didn’t congratulate me. Nor would he be able to ever acknowledge in the future that I had a mind (and knowledge) that is different than his own.
Building an interface protocol.
One man with ASD form the UK is a faithful follower of my work. On the release of my latest book he said,
“The Aspie person always sounds like the villain in your writing, Kathy.”
That hurt. I don’t want him to believe I consider him the villain. Blaming someone else for just who they are is certainly no solution. It doesn’t get to the heart of the matter. It is such a delicate balance to explore the dynamic of Empathy Dysfunction (EmD) in order to enlighten people, and yet not blame.
My goal is to enlighten and to search for the elusive interface protocol, so that even without empathy, “Aspies” and NTs can connect.
Ready for summer? Sunscreen, a volleyball and maybe passports too?
If you got that covered, I will talk about what most parents with diagnosed children on the Spectrum really want to hear, which is how you can not only survive the summer, but actually enjoy it as well.
As parents, we love our children and we do whatever we can to make their lives happy and healthy.
One thing I always recommend is to not stop medication over summer. Children with ADHD especially thrive on structure and school gives them just that. Medication will make it easier for him to behave in school, but that’s not the only time he needs it. Without medication, it’s harder for him to be around others and participate in certain activities. Your carefully planned vacation can turn into a nightmare quickly for the whole family, including the little one.
Do not renegotiate the rules. You already have established when your child can watch TV and when it’s time for bed. While you will be tempted to be more flexible during holidays, this will bring you a lot of stress and struggles just in a few weeks. Ten extra minutes in front of the TV will turn into an hour. Don’t change a routine that is working for the entire family depending on the time of the year.
A risk you can face in general, but more during summer months as you spend more time together, is your tendency to shield your child from everything that might put a shadow on his face. As children overcome adversities, their self-confidence grows. They’ll feel more in control. The key to good parenting is not protecting kids from everyday adversity, but encouraging a positive attitude toward stress. However, don’t forget to enjoy your summer as well. If you are struggling with being a helicopter parent, here are the lessons I learnt from being one.
How about summer activities? Create a safe playground in the backyard, where your hyperactive children can exercise with their friends. In this article from ADDitude Magazine you can get a few tips for activities appropriate to each age group (young, school age and teen).
If you are thinking of summer camps, my best advice is to find a summer program that offers activities your child really enjoys and maybe one where some of his friends are already going. The 2019 ADHD Camp Guide contains a list with camps for children with attention deficit disorder and learning differences.
Parenting a child on the Spectrum can be hard, I’m speaking from my own experience. In our MeetUp community you can read and get involved with other parents who are sharing the same struggles as you do.
I’ve written a book about co-parenting with an Asperger Syndrome partner. It’s called “Out of Mind—Out of Sight: Parenting with a Partner with Asperger Syndrome (ASD)”. It is important to recognize that if we don’t reveal the dark side of these relationships, we can’t search for solutions to the all too real problems of the AS/NT family. The last thing I want to do is leave NT parents with the feeling that they are alone. Erasing that loneliness is the first step toward parenting successfully with an “Aspie” co-parent.
If you have suggestions for other parents on how to survive summer, please leave a comment!
In 2018, the Centers for Disease Control and Prevention published a new report announcing a 15% increase in autism’s prevalence in the United States, to 1 in 59 children, from 1 in 68 two years previous.
Having someone on the Spectrum in your life is more and more common. You might have met them in the queue at the grocery shop or noticed high functioning autism in your best friend’s life partner.
So why is it that society still struggles to integrate autistic people into the workplace? Neurodiverse people frequently need accommodations, like headphones to prevent auditory overstimulation or they avoid making eye contact (I wrote more about this in a detailed blog post). Most of these challenges can be managed and the results can be great. Many on the Spectrum have a high IQ and research shows that some conditions, including autism and dyslexia, can bestow special skills in pattern recognition, memory, or mathematics.
In order for these people to showcase their talent, companies need to change the way they recruit and their career development policies to include a diverse pool of talent.
Not surprisingly, when autistic people get the support they need, companies are thriving overall. Hewlett Packard Enterprise launched a program which introduced over 30 participants in software-testing roles at Australia’s Department of Human Services (DHS). Preliminary results suggest that the organization’s neurodiverse testing teams are 30% more productive than the others. After the success of this program, the Australian Defense Department is developing a neurodiversity program in cybersecurity. You can read more about it in this article published in Harvard Business Review.
How can we start employing more autistic people?
Don’t rush the process; make sure you are hiring the people with the right CV for the job. Partnering with companies that already have experience in autistic behavior is a way to facilitate knowledge exchange. Expect a change in your company culture and your employees.
If you have a loved one on the Spectrum, please check our private MeetUp group. We have members from around the world meeting online in intimate video conferences guided by Dr. Kathy Marshack. Learn More >
Join my Meetup Group
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Going over the Edge? Life With a Partner or Spouse With Asperger Syndrome
In this 15-year Anniversary Edition, Dr. Marshack shares insights into the intricacies of a NeuroDiverse relationship through vivid storytelling. She offers tools and strategies on how to cope and reclaim your sanity as a NeuroTypical (NT) and survive in a NeuroDiverse relationship.