Travelling with Autistic Family Members

Summer is often the time when most families travel and take their holidays to relax and get away from work. Travelling can be an escape from your daily routine or a daunting experience whenever your partner or your children are on the Autism Spectrum, but from my experience, I can tell you there are ways to make it easier.

A study from I.B.C.C.E.S. where 1,000 parents with a child on the Spectrum were surveyed, found that only 13% of respondents take vacations as a family. This leaves 87% of families without a holiday, without taking time off to decompress and without properly enjoying the summer holiday.

Travelling with a visible or invisible disorder has come a long way since just a few decades ago. The travel industry has become more aware and often offer facilities for families with children on the Spectrum.

What are a few of the things you should know and that will make your life easier, whenever you are travelling with an adult partner on the Spectrum or with Autistic children? Keep reading and if you have tips from your own experience and please share them in the comments!

 

If you are travelling with an “Aspie” partner

I’ve written a small blog post where I am sharing from a wife’s experience of flying with her “Aspie” husband. It has a bit of humor in it, but if it works, it works!

Other things you can do to ease the travelling experience for your ASD partner:

  • Attend “Mock boarding” experiences

If you have to fly out of the country, certain airports are providing “mock boarding” experiences, which offers a trial run of what it is like to buy tickets, go through security, and buckling up on a plane that never takes off. Washington Dulles International Airport, as well as Atlanta, Boston, Bridgeport, Manchester, Philadelphia, and Newark have offered this special program.  

  • Ask for help from TSA

TSA also provides a hotline – TSA Cares (1-855) 787-2227. Call 72 hours before your flight to let them know that you require assistance.

  • Ask for early boarding from your Airline

You can ask your airline to assist and, in some cases, it might be free, depending on the airline and available resources. Be sure to see if you can get early boarding and priority boarding as well, so you’ll be the first in the plane.

  • Your hotel may help you too

While booking, it might worth it to call your hotel and ask where the quieter rooms are, away from all the foot traffic or facing the pool area.

  • Work with a travel agent

Travel agents are known to be on the more expensive side, however some are not charging you. They are being paid a commission fee by hotels who want their business. 

Agencies specialize in assisting and working with people on the Spectrum or disabled, so they can take care of organizing every aspect of the trip for you, including booking your tickets, tours and restaurants. If you want a smooth trip and a comfortable stay, they might be your best choice.

 

If you are travelling with children on the Spectrum

  • Prepare the field ahead of time

Show your children videos and photos from the places you will visit before you start travelling. Give them time to accommodate and be sure to discuss what you will visit and what they can expect while being there. These preparations will enable your children to enjoy adventures as challenging as exploring the caves in Mexico! I found this article in the New York Times that follows the story of a travelling mom and her experience. It’s worth a read to help you get a few tips.

  • Visit accommodating museums

Some museums around the globe are actively taking steps to improve their experience and be more inclusive to accommodate visitors with disabilities. 

For example, Victoria and Albert Museum in London, United Kingdom, has a special branch called “V&A Museum of Childhood”. They have created a “Making SENse Family Pack” which includes a backpack you can borrow for free. It includes maps, activity suggestions and toys to play with. The museum can also provide ear defenders and if you check their website, they provide all the information you might need to know ahead of time for a family visit (details about cafés, toilets, ways to avoid the shops if necessary, which times are quietest and where can you find a quiet room).

In the United States, the Smithsonian runs “Morning at the Museum” events. The program offers early entry to those on the Spectrum, which means the lights are dimmed in certain areas and the volume is turned down. Usually, the buildings are quieter and less crowded. You can also avoid queuing, which is a painful point of a holiday. The museum has included sensory maps and tips. Quiet spaces are also available.

These are just two examples. Be sure to do your research in the city where you plan to spend your holiday and you might be pleasantly surprised! You can find more tips on Autism in Museums.

  • Stick to the schedule and set the rules

Stick to a similar eating and sleeping schedule that your child is comfortable with. It might require additional planning on your behalf, but your effort will be worthwhile. For example, bring snacks if your children cannot get their meal at their usual time.

Explain to your child the rules before you leave! This way they will understand what is expected of them and it will be easier for them to follow. 

  • Flying out of the country

Ideally, you would pick a short flight of an hour or so, but this is not always possible. Visiting the airport ahead of time with your child would help him/her get familiarized with the surroundings and what to expect. Be sure to explain what the steps are to go through and what will happen (for example, the security check and the passport control).

Check to see if you can board early or buy priority boarding for your family. Packing a carry-on bag with anything you might need is also a good idea. It can include headphones, toys and documentation of your child’s diagnosis.

I’ve also written extensively about parenting in my book “Out of Mind – Out of Sight: Parenting with a Partner with Asperger Syndrome.” I’ve filmed a video to tell you more about it below: 

Why Do “Aspies” Always Say No?

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 withAsperger’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 theirAspies” 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:

Tuesday, August 6th at 10:00 AM to 11:00 AM Pacific Time

Thursday, August 8th at 2:00 PM to 3:00 PM Pacific Time

Thursday, August 15th at 7:30 PM to 8:30 PM Pacific Time

 

I hope to see you at one of these video conferences!

How to React to an ASD Meltdown

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.

 

Also, be sure to read a free chapter of “Out of Mind – Out of Sight: Parenting with a Partner with Asperger Syndrome (ASD)”. This book discusses the science behind Aspie” behavior and how you can initiate the rules of engagement (ROE)that help your Aspie” give you the emotional support that you need.

I filmed a video for you, so you can understand what you will get from reading the book and what lessons you can expect to learn.

Empathy is a Super-Power

A huge response to Empathy: “Asperger’s” Style.

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 Nobel Peace 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.)

Empathy: “Asperger’s” Style

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.

Parenting During Summer Months

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!