Norwegian Cruise Ship "Loses" Autistic Boy

[NayRN]

TAKE TWO. It reset halfway through my answer. Let's see if I can hit all the points again.

 

You already know all children are different, autistic or not. Remember that autism is not a single disorder. It's called spectrum for a reason. There are many flavors of autism, like PDD and Asperger's. I personally have one of each of those two flavors, the main difference being the severity of the language disorders they had as children. What autism really is is an umbrella term that covers a whole range of problems/disorders they realize occur together in children suffering this spectrum disorder. That's why the doctors who originally misdiagnosed my daughter didn't "really" misdiagnose her. Everything they said about her was spot on...but they forgot to go that extra step and look for the over-arcing cause of everything she was diagnosed with. That actually is important, because how you treat (for instance) a child with ADHD who doesn't have autism is different than how you treat one with autism.

 

Autism also has a wide range of affectedness. Both of my children are high-functioning, but many children I have taught or know are not. While a person with autism will always struggle with autism, those who are are moderate to high-functioning can be taught to compensate for many of the problems and function in society. Some autistic children will never reach that. So, can they "grow out of it?" No. It's a neurological disorder. Can they be taught to compensate for it? In some cases, yes.

 

Even when they are taught to function, there will be moments that are overpowering for them. Most days, you would think my two teen autistic kids are slightly awkward (socially and physically) geniuses. But if they get overstimulated, they can lose the ability to make decisions about their situation...even lose the ability to speak coherently. My children are lucky in that they can still type or write longhand, and that helps order their minds, which not all kids can do, but it's no unusual for me to get a phone call or text saying "I don't know how to handle this." It took me five passes to get the information from my oldest about WHERE she was stuck over the phone, so I could pick her up the other day. She just couldn't put the words together to give me enough information to find her and help her.

 

Which brings me to one of the best things a cruise line can do for these kids. Have an established chain of command and "quiet area." Tell them who their counselor is. Who do they talk to if they are overwhelmed? Where can they go to cocoon in a blanket or read a book in quiet? If my kids know their chain of command and their respite area, they can usually use it. If they are denied that, it's meltdown time for at least one of my children. When they are overwhelmed, that chain of command and respite information may be the only clear thought they latch onto.

 

Many autistic kids (nearly every one I know) has OCD tendencies. That can make changes in routine problematic. Going home by a different route because of an accident can completely disorient them. Changing schools...even changing classes for the first few weeks or months of a school year can mean problems acclimating at the beginning of class. If the child has been taught to, he or she may look for a map on a cruise ship and find where he/she wants to be. That's your best case scenario with some of them, because many of these kids are loathe to ask strangers for help. One of my kids wouldn't tell the school bus driver which direction from the bus stop she lived, so he could drop her closer to home in a snow storm. They don't always recognize the staff in general as help as much as they recognize certain positions as potential help...or none, depending on the child and how overstimulated he or she might be.

 

Autistic children (not entirely unlike other preteens and teens) do not always recognize physical dangers. If they are wandering unescorted and not upset about being alone, they will be much like any other kid doing so, save the fact that they might wander places other kids wouldn't. Like other kids, they don't always associate the coming effect of being punished or harmed as connected to what they are currently doing, in the heat of the moment.

 

Unlike your average preteen or teen, they also don't recognize interpersonal dangers. Part and parcel with autism are some traits people who don't understand find very frustrating and annoying. This would include the tendency to fixate on likes and dislikes and discuss them at length (whether or not the other person is interested), repetitive motions, toe-walking (for many of them), and atypical social cues and reactions. Worse, your average autistic child does not recognize the body and facial cues that warn that the person is becoming annoyed and is ready to explode. To them, the explosions seem unwarranted and unexpected. Though my two teens have each had three or more years of counseling to teach them to recognize these things, they don't always do it when their minds are otherwise occupied...and they don't always interpret what they see correctly. My kids will often think someone is mad at them when the person is nothing of the sort. Or they won't understand why someone else misunderstands what they feel, because their atypical social cues give the other the wrong impression. Teaching a preteen or teen spectrum child high-functioning enough to understand this problem information on how to react to avoid misinterpretation is really hit or miss in effectiveness.

 

Hand in hand with the inability to read facial expressions with certitude (a few of these kids get really good at doing it, but most I know never do) comes problems with facial recognition. My oldest is better at it than her brother, but even she has problems recognizing famous faces in pictures or portraits. If you showed her portraits of George Washington and Ben Franklin, she would be guessing which was which, though (ironically) she's in AP History right now and top of her class. According to her, faces do not have definition for her. They don't look much different, from person to person. But she can tell her classmates apart by other factors...voice, inflection, how they move, word choices, etc. My son has a more difficult time with living people than his sister does, though he seems to do better with famous people in pictures than she does. Unless they are part of his small circle of teachers, family, or friends, he can tell you someone looks familiar, perhaps that they go to school with him, but he cannot tell you who people are outside that circle, even if he has had classes with that person for four years.

 

Another problem is that people often guess incorrectly about what an autistic child sees and hears. Since autistic children rarely look others in the face unless told to, many people mistakenly believe the child is inattentive, when the child is actually taking in everything being said and done, albeit from the corner of the eye. I had to go head to head with a teacher and point out to him that an A average in his class meant my child WAS paying attention. Autism meant she wasn't going to spend the class staring at him while she learned. Likewise, people don't understand that a wandering or circling autistic child may well see and remember combinations and codes and passwords that the adult enters, not realizing the child is aware of it. Since the movements look random, they don't realize how aware the child is.

 

You're correct that there are few ways to stop kids from making a break for the doors, but there are ways to make it less likely that they will succeed. A stationary person at the entrances/exits, buzzers on the doors and cameras that pop up on security screens whenever any door but the front entrance/exit is used, combinations to open doors when an alarm is not active (though remember that autistic kids are likely to figure out the code in passing)... There are plenty of ways of making sure a child doesn't make good on the dash to freedom.

 

DML

 

As a nurse I'd like to say Thank You for this post! Not only did I learn something but you wrote it in a such a way that makes it easier for others to gain more knowledge!;)

[ch27088]

DMLyons -

An outstanding post. You hit the nail on the head in many, many areas. My oldest son has Aspergers and ADD and exhibits all of the traits you describe. He's a high school senior pulling straight A's due to the strategies and coping mechanisms he developed over the last several years. He's OCD, socially inept, and would much rather go sit somewhere quiet and read than be around people. He gets overwhelmed by change, which was a huge issue when in elementary school when he would be pulled from class for special assistance. It really threw him off. He NEVER wants to go on vacation, including cruises, because they get him out of his comfort zone.

 

Anyway, I just wanted to compliment you on your excellent post.

 

...and SDMike that's the difference between you and the father who first wrote the post. You know that your son would not like a cruise because it is out of his comfort zone. Usually children who are autistic are uncomfortable being around people they do not know and are not familiar with. Why would parents leave their son with strangers and then complain that the was missing. Please understand I know that I would be upset if my child was missing, but you have to think about the environment and who you are leaving your child with if he/she has special needs.

[NLH Arizona]

If the parents feel that NCL’s offer was a slap in the face, then I would suggest that they put their demands in writing. Hopefully, I’m correct in saying that money is not the issue.

 

What I would want is:

• An explanation as to how my child was allowed to leave without a parent.
  
• What programs NCL will institute to make sure that this never happens again.
  
• What additional education/training will be given to staff members.
  
• What program would be set up that if a child shows up alone, who is normally not alone, the ship will tracked down the parents.
  
• And if it is “about the money”, then tell them how much you want.
  

The parents or their representative have already contacted the press (article that was in the first post), so their story has been told and should be a warning to all parents, whether their child has a disability or not.

 

Maybe leaving children in the care of people you don’t personally know is not a wise idea, especially on a cruise ship, hotel, etc., since you don't know anything about these people.

[DMLyons]

As a nurse I'd like to say Thank You for this post! Not only did I learn something but you wrote it in a such a way that makes it easier for others to gain more knowledge!;)

 

Anytime!

 

Another thing I thought of later to add... Another thing to keep in mind about many autistic children is sensory integration and sensory defensiveness disorders...and...oh, let's just get into it.

 

If they display defensiveness, they may resist touching or eating things they find uncomfortable (sticky or grainy, for instance). One of my kids won't eat white beans or peas (because of the texture), won't finger paint, etc. They may not use their fingertips to dribble a ball, which other kids sometimes make fun of. Sounds, even sounds that are not loud, may tweak an autistic child, sending him or her into a panic, interfering with being able to concentrate, and even causing pain. As an example, my oldest had an auditory defensiveness that caused her to clap her hands over her ears and take off running when in a room with an exhaust fan, and she avoids loud crowds to this day, because the sounds overwhelm her.

 

Integration is harder to see directly. As a test for it, doctors will sometimes give a child a long, complex sentence to repeat. Though the child may well hear the whole thing, he or she won't process the entire message as a block. In repeating it back, there will be pieces missing, out of order, and so forth. In the classroom (and at home, when the kids were younger), we often offered single-step or two-step commands instead of a long list at once, which gets lost in translation. We often had picture boards for routine, until a child learned to do all the steps in order. We often gave students learning long, complex formulas and processes a list of steps to take, so the child could refer back to it until he or she had learned to do all the steps in order. Classroom rules are posted on the wall, for reference. Once the child learns something, chances are, it's going to stick well, but the process of learning takes a little patience, with some students. I always assume an autistic child has integration difficulties and then gauge the severity of it from there.

 

And autistic children are often very literal. While it may seem like nitpicking, in actuality, the autistic child often has problems with nuances in language. If you say A, they will take it to mean PRECISELY A...no more and no less. A good example of this is to never give an autistic child a choice when there is no choice. If you say "Do you want to do your math now?", the autistic child will feel perfectly justified in saying "No." After that no, there is no yes, for many children. If the child wants to do something else, and it's time for math, the correct approach is to make it a rule. "It is time for math now." Posting the schedule of the day on the wall helps with that. Structure helps keep order.

 

If there is a choice involved, be specific about the choices. "It's time for math games. Do you want to do the pattern matching game or the time game?" If the child tries to give a third choice, you can accept that, but it sets a precedence that the child can make his or her own choices instead of choosing what is offered. I've found it better to repeat the choices. It took me a week to teach one student (who had been allowed to set his own choices at home until the age of 5) that sometimes what he wanted just wasn't going to happen, and screaming fits wouldn't make it happen. After one really rough week, he learned to make a second choice when told it wasn't going to happen. Thankfully, according to his mother, it also ended the screaming fits about making a second choice at home.

 

People who aren't familiar with autistic children may find them awkward physically (Remember that fine and gross motor problems often go hand in hand with autism.), picky, flighty, inattentive, random, and generally difficult. Many autistic children end up in all sorts of therapies...everything from PT and OT to speech therapy, auditory therapies to cut down on defensiveness, and counseling to teach coping mechanisms and interpersonal skills. Sadly, not all school districts are diligent about this. My oldest was in desperate need of OT, but the district would only give her speech therapy, leaving me to do OT at home. By comparison, another school district offered OT to my youngest, who was not nearly as marginalized in fine motor as her older sister was at the same age.

 

DML

[NayRN]

Anytime!

 

Another thing I thought of later to add... Another thing to keep in mind about many autistic children is sensory integration and sensory defensiveness disorders...and...oh, let's just get into it.

 

DML

 

Sorry...cut the quote short so the post wasn't so long...but I did read it all!!!

 

WOW! More learning for me!!!!! My only nursing experience is in the Intensive Care Unit (ICU) so I've never been exposed to Autism....well, except in nursing school and that was hardly anything! :o

 

I have no idea what you actually do as a profession, but I'm assuming you are an educator of some sort.....if you aren't, you sure should be!! I just really want to thank you for helping me to understand a little bit more about Autism.....and I got to learn about it from cruising!! Bonus!!!;)

[trolleycar]

Hi spacepotatoes

I asked the question about a child with Autism because I have heard of it but never have come in contact when any one that has the illness if in it is deed a illness or is it a Birth Defect

If I knew more about Autism I would not have asked the question. I am interested in the subject do to the fact if a client were to inform me that there child is Autistic I will know the correct questions to ask to help the Client get the services that want and need.

I have been told that the only stupid question is the one that is not asked.

and as in my cast I know nothing about Autism so that is the reason I asked my question.

But me asking my questions and the replys I have received, I learned a lot about Autism

[DMLyons]

I have no idea what you actually do as a profession, but I'm assuming you are an educator of some sort.....if you aren't, you sure should be!! I just really want to thank you for helping me to understand a little bit more about Autism.....and I got to learn about it from cruising!! Bonus!!!;)

 

My current day job is in the publishing industry, but I am mother to two mildly autistic teens. When my oldest was 16 mos old, I started working at a special needs day care...and eventually ran my own. When I moved back to New England, I went to work in special needs teaching in the schools. I gave that up to expand my publishing interests two years ago, but it's all still with me, of course.

 

DML

[DMLyons]

Hi spacepotatoes

I asked the question about a child with Autism because I have heard of it but never have come in contact when any one that has the illness if in it is deed a illness or is it a Birth Defect

But me asking my questions and the replys I have received, I learned a lot about Autism

 

It's neither a birth defect nor an illness, specifically. It's a neurological disorder, which are not classified as either. Hopefully, you have a handle on what autism is now, which can only help you serve your clients better.

 

Good luck!

Brenna