Scouting with Invisible Disabilities

[SheriB]

My two sons, 13 & 11, have been in Scouts since Tigers. My oldest has Asperger's Syndrome, a form of Autism. To look at him in a photo, there is no clue that he is disabled in any way.

When it was time for him to cross over, we searched for a mainstreamed troop that has empathetic leaders, experience with disabliities, and caring Scouts. We found what seemed a perfect troop for him.

But, when he joined Boy Scouts, nearly 4 years ago, his differences, and thier preparedness to lead & serve him became painfully obvious to everyone in the Troop. I have done all I can to educate the Scouts on his differences, how to minimize the chaos that bothers him severely, and how to deal with his melt downs. But, being that it's a strongly "Scout-led" group, they just don't seem to get it.

Partly because of his socialization issues, when the other members of his patrol work together on merit badges, he is left out. When the others put together the slide shows for the courts of honor, he is left out. He is not the only Scout with special needs in the troop. One of his patrol members is wheelchair bound. No one fails to make sure that he is involved in some way in everything the troop does.

The difference, the visibility.

Our council's special needs department has provided nothing to help the situation. When asking for assistance for both scouts at Summer Camp--accessible campsite for the one, and a "shadow" Scouter or Scout for my son--the department was quick to arrange accessibility for the wheelchair, and to deny any assistance for my son.

Two summers ago, I prepared a detailed printed schedule for him, with space for the leaders to make changes as necessary, and to make specific notes for me when they returned home. What ended up happening, was that he was sent with other Scouts to Merit Badges that he did not want to participate in, changing his entire schedule (which is a major problem for people with autism) One day, the attitudes of the leaders was put to paper (I'm sure the adult forgot that the notes were coming home with my son) and his words were "If he can't do things the way he's supposed to, he shouldn't be in Scouts!" This man's bile then filled my son's camp journal with everything he did wrong and every incovenience his disability caused.

After that trip, my son decided that he hates Scouts. The only events he has enjoyed are the ones that I've been along on (almost all of the trips he's gone on & every one of the meetings where I'm overstepping the bounds of adult leadership according to other troop leaders) where I keep him involved & resolve the conflicts, and sheild him from intollerance & abuse. The only merit badges he has completed in his 3 years at summer camp were finished this year with me as his shadow.

Do other councils have better response to invisible disabilities, training for leaders & youth, or resources available?

[John-in-KC]

Please contact me by private message with your email. I will point you to several Scouters in my council who are lynchpins in our Special Needs programs.

 

YIS John

 

A Good Old Owl too

[kenk]

Hi SheriB,

 

I COMPLETELY understand your message and issues. My son, who will move up to Boy Scouts this March, also has Aspergers Syndrome (AS). Though his is somewhat mild, he still has lots of social issues, ticks off/pesters other kids, can't understand many social issues/interactions, and definitely has meltdowns, though these have decreased with age.

 

I also understand your description of AS as an "invisible disability". I've often told family and even his school's special ed team that he'd have been better off if he'd been blind rather than having AS, since people at least understand blindness. People tend to thing kids with AS are just jerks or obnoxious and either avoid them or make fun of them. Luckily my son is big for his age - he'll likely be 6'-6" by high school and he has been taking Tai Kwan Do for several years and is currently a purple belt [white-yellow-orange-green-blue-purple-red-black], so they hopefully won't physicaly hurt him, but the heartache of the social issues are just as painfull to him.

 

The first real sign of things to come came in the first few hours of the first day of his first Cub Scout Day Camp (the first Scout activity that I didn't attend) when I got a call telling me that my son was having real problems and to come and take him home. I arrived at lunch time and he seemed OK, so I kept him there and shadowed him. As the day progressed, he did indeed have meltdowns, but I was able to calm him down and give some guidance when necessary. Since then I have attended every day of Day Camp every year since then. As the years went on he was able to do more with less intervention, but he still had the meltdowns and needed guidance.

 

Over the Thanksgiving break this year (2005) we sent him (alone - well, with his younger sister) to a local YMCA day camp for a day, but when we picked him up the stories indicated he'd had a real bad day. Lots of problems with other kids. He tries to tell them what their "supposed" to do (rules are VERY important to him), argues with them - not understanding that they might be right, melts down when games don't go right or he doesn't win, and generally irritating to them because he keeps talking and talking and talking about stuff that they don't care about. I was VERY sad.

 

Just two hours ago he came home from a second try at the very same camp (hoping he can go there this summer, since both my wife & I work), and he had a GREAT day. There's hope!!

 

My plan is to continue to shadow him as a registered BS leader. I'll attend meetings, campouts, and other activities and try to stay back as much as possible. I'm not sure how to shadow him when he's with his patrol. My plan is to have a talk with the Patrol Leader (PL) and the Scoutmaster and ask the PL to get me if something isn't going well. He'll be in the patrol with at least three boys who were in his Cub Scout den and have known him for many years, so I hope that helps too. Mostly he just needs someone to calm him down when things don't go "right".

 

For the two-week summer camp, my plan is to attend that too. I'll do what I can to help keep him "OK". I"ll be there to make sure he is treated fairly. I don't know what else to do.

 

I know AS is tough on the other boys, and I know that the senior patrol leadership simply is not equipped to deal with the issues of AS. As I'm sure you know, there are a lot of people out there that feel AS doesn't even exist and that our boys are simply spoiled or misbehaving.

 

(Sigh) I'm just a dad doing the best that I can to give my son good experiences, make sure he's treated fairly, and keep him happy.

 

I wish you the best of luck for you and your boy.

[scoutldr]

I've been reading these posts with interest, and, at the risk of sounding insensitive (I'm not), I'm afraid I have to side with the leaders. It's important to remember that the Scouting program is delivered by volunteer parents who are neither trained nor, in most cases, have the inclination to be therapists or mental health professionals. The only obligation of a volunteer leader is to try to ensure that the scout gets his meds on schedule (and even that's been debated here) and to ensure that one scout's behavior (whether there's a DSM IV code for it or not) does not disrupt the program nor cause a safety hazard to himself or the other scouts. We have to be fair to ALL the scouts...not just the ones with special requirements. If a scout can participate within those parameters, he is more than welcome.

 

The scout program is designed to be "boy led" and that's how leaders are trained to deliver it. Each scout also is expected to "do his duty" to help others and to pull his share of the load, contributing to the team. It sounds like the scout program does not "meet his needs" and perhaps you should look for other options, such as forming a troop for AS kids. It sounds like there's a lot more of them around than there used to be. To expect the Council to provide an adult or another scout to follow a 13 yo around to make sure he goes where he needs to and does his MB work, and doesn't encounter any "melt down triggers" (and if he does, someone must be made to "apologize" to him?) is unreasonable and a cost that most camps can't afford. It wouldn't happen in my Council or troop, either. We have precious few adults participating anyway, and we can't devote one full time to one scout.

 

My best advice is that if your council does not have a Special Needs program that meets what you think are reasonable standards, they would probably be thrilled to have you volunteer to get it up to par and help raise the funds to support it. That's the only way things get done in Scouting at the youth OR adult level...if a gap exists, get in there and fill it. Don't expect "someone else" to provide it for you.

 

Good luck.

[OldGreyEagle]

This is a terribly complex issue. My son has ADD, is severly dyslexic and was born with epispadias. You can do a search on this forum for the word epispadias and read what that is. He has to catheterize himself every 3-4 hours through a stoma on his abdomen and sleeps with a urinary drainage bag. Having said all that, He was SPL of the Troop, was a patrol leader for the 2001 National Jamboree, spent a season on Camp Staff as an assistant Range Master and made Eagle scout at 16.

 

You wouldnt know there is anything "wrong" with him to look at him. He once refused to do a reading at a Scout's Own worship service because he literally couldnt read it. The ASM was about to go ballistic when I saw them talking and asked what was going on, I told the ASM my son was dyslexic and that ended the confrontation. I then thought about disclosing my sons conditions. Something I hadnt done because his issues were so much a part of our life, it didnt occur to me to tell anyone as I was sure "all" were briefed on his condition.

 

The Troop has had many special needs scouts. Currrently we have three boys in wheelchairs/Walkers, one of which was elected SPL. We have also had a multitude of ADD scouts as well. Our Committee Chair is a pediatrician and when she goes to summer camp, she has two foot lockers, one for her stuff and another for the troop meds. And I suspect we have had a few ASperger's as well, more from identifying behavior from this forum than from any disclosure. We have had many scouts from a local private school for students with disabilities

 

At the time my son joined the troop, several other boys joined as well who also had some invisble disabilities. Some were a bit more visible after working with the scouts, others harder to see, but were there. A common denominator was the scouts who did the "best" had their families fully involved in the troop. The father's (me included) of the more challenged scouts were sure to be on every event to watch over, but not do for, our sons. At times we would take turns talking to a scout, other than our sons because sometimes the scout would rebel against what Dad said, but would do the same thing if another dad said it. As time went on, the boys matured and the dads and moms had to do less.

 

We still had problems with other adults, a few who didnt think ADD was real, that we were just overprotective parents of spoiled rotten kids. We got a boost when one normally OK kid missed his medication and became a raving loon and then settled back down after proper medication. We developed suport systems, if someone couldnt make a trip, someone else was to watch the boy. We never did convert all the adults that ADD and other syndromes were real, but we worked amoungst ourselves to give our boys and ourselves a great experience. I tried putting myself in other leaders position, looking at it from their experience. I am not sure its reasonable to expect a volunteer with no background in any type of mental/emotional disorder to handle such a child. We can talk about training and the sensitivity required to handle such youth, but there will always be adults unable or not disposed to be the one to handle such youth. The best thing to do is cooperate with parents in similar situations, develop support mechanisms and enjoy scouting(This message has been edited by OldGreyEagle)

[SheriB]

In response to "scoutldr"--

 

I think you misunderstand what I have asked from our troop leadership...#1 that the schedule that they fill out at the PLC meetings be given to my son (schedules & expectations are critical to him)...#2 That at meetings, everyone is treated fairly...because of his poor eye contact & body language, he has been singled out to be blamed for things that other Scouts have done...#3 That he be allowed to isolate himself when he feels the need within the meeting or activity area (to sit under a table, in a corner, under a tree) while he calms down. #4 That meetings be orderly...starting on time, following a schedule.

At Summer camp, he had selected merit badges to work on, pre-registered with the leaders, and after he arrived at camp, he was the one who had to change ALL of his choices to fit with other Scouts, and the Leaders generally stay at the campsite, instead of being with the boys.

In my training, I understood that it was the Scouters' responsibility to be sure that the Youth are effectivly leading the meetings, to assist & support those youth leaders to provide effective programs for the Scouts in the troop. To help guide the youth into becoming good leaders: Encouraging each other, building self-esteem, helping through wekanesses, celebrating strengths, encourage teamwork...all keys to being a "good leader" whether youth or adult.

What generally happens though is the Leaders have thier social hour, ignoring the boys who magnify differences, blame for weaknesses, take positives for granted, exclude those less able.

Take, for example, our recent "Challenge COurse" excursion...Having been an instructor myself, I know the importance of the low ropes course, to build confidence, team work, and self-esteem. We had several Scouts along that had never been through the course, and were looking forward to the low ropes, unsure of their ability to tackle the high ropes. The Scouts (primarily older scouts) were allowed to skip the low ropes, and jump straight to the high ropes. 4 Scouts didn't even attempt the course, and 3 scouts failed the first obstacle on the high course. Tell me where the confidence is, the team work, or the self-esteem for the boys that were not considered, left out, and failed.

 

I am not asking them to be therapists...just to better manage the troop.

 

When we have 7-10 adults along for a Summer Camp, for about 15 kids, I do not feel it is unreasonable that they accompany Scouts to their activities, assuring ALL scouts, not just mine, can attend the Merit Badges of their choice. Tell me, if you were looking forward to learning leather work and wood carving, and were forced to attend environmental science instead--a topic that you have NO interest in--just because that's what another Scout wants...And that's what happened for EVERY ONE of his merit badges 2 years ago.

 

As far as the appologies for his triggers, he should--and does--appologize for his behaviors. But, common courtesy for ALL requires that if there's a major misunderstanding, and you've offended me, even without knowing, that when you do know of your inadvertant faux pas, that YOU appologize also. Ie. you sit in an empty seat, not seeing my bag under the table. I approach you, appologize for having to reach under your seat to get my bag, wouldn't you naturally appologize for having taken "my" seat???

 

I have volunteered as much as I can...I've been wearing several Scouter hats for 20 years...well before I ever had boys of my own to lead...I've provided the leaders & youth with information to understand & accept invisible disabilities, but what I can't make them to is understand, accept, appreciate the differences (strengths AND weaknesses) and make the small changes to allow my Scout to be a valuable member of the troop.

[seabear]

The spectrum of physical and mental disabilities is broad, yet none of these permanet disabilities should prevent the scout from being a participating member of a scouting unit. The opportunities to develop alternative requirements is limited only by the imagination. In 1995, alternate requirements for Tenedrfoot, Second Class, and First Class ranks were established.These requirements can be found in the "Scouting for Youth with Physical Disabilities"(#33057C), "Scouting for Youth with Learning Disabilities"(#33065A), "Advancement Committee Policies & Procedures"(#33088C), and "Boy Scout Requirements"(Y2K)(#33215C/D).

 

The basic premise of Scouting for youth with disabilities is that they want most to participate like other youth, and Scouting gives them that opportunity.To STRESSES the Scouts abilities rather than disabilities, through Scouting flexibilities and range of choice. Each boy is expected to do his best!

 

It starts first with the Parnets or guardians of the scout,then the Troop Committee, then the District, and the Council to register the boy as a special needs youth.

From there, the Troop, leadership along with the parnets/guardens need to decide how best to meet the needs of the scout. If this means that one of the parents is required to be present with the scout at camp or activlty. Knowledge of any scout, within the troop should be well noted by all in charge from the scout patrol to the adults, without said knowledge anything can happen.( peanuts, bees, non-swimmer).

 

If the Troop leadership expects that there is a problem, in which there is no discloser on medical forms etc... it still the leadership responsibillty. to question emotional/behaviorial aspects of the scout. What it takes to find source of the problem now will allow the handling of the situations in the further so that all scouts can enjoy the program. Be Prepared

 

As for training, there are some Councils and Districts which do offer training, asked your Council Training Committee Chair when they will be offering the next course/section;

[evmori]

My son and daughter are both deaf. They wear hearing aids & have learned to talk.

 

My son thrived in Boy Scouts. He is a visual learner & Scouting is very visual. He was also elected SPL three times and earned his Eagle. He also graduated from a public high school with honors (as did my daughter).

 

I realize all disabilities are different and I don't mean to sound insensitive but asking for a laundry list of things that are not of the norm of any group is just not fair. By asking for "special treatment", what are we teaching? To me we are teaching that if you are different, you should be treated different. This isn't a good thing. Sure these kids have special needs. But all their needs aren't special. They need to learn to feign for themselves. This is a life skill that will be a great benefit the rest of their lives.

 

Ed Mori

Troop 1

1 Peter 4:10

A blessed New Year to all

[scoutldr]

When we have 7-10 adults along for a Summer Camp, for about 15 kids, I do not feel it is unreasonable that they accompany Scouts to their activities, assuring ALL scouts, not just mine, can attend the Merit Badges of their choice. Tell me, if you were looking forward to learning leather work and wood carving, and were forced to attend environmental science instead--a topic that you have NO interest in--just because that's what another Scout wants...And that's what happened for EVERY ONE of his merit badges 2 years ago.

 

What about the scout who needs Env Sci for Eagle (as they ALL do), but is forced to do Leatherwork instead because your son needs an escort? Is that any more appropriate? I have been attending summer camp for almost 30 years...changing schedules is the norm, due to low or high enrollments, staff availability, schedule conflicts, and failure to meet prerequisites. If the morning Swimming MB class has 2 scouts and the afternoon session has 45, schedules will be changed. That's the way it is. My point is, part of teaching a scout to be self-sufficient is to expect him to complete the week without direct supervision. If they go home without completing their MB, they can explain to their parents what happened. The opportunity was certainly provided. As a leader, I will do spot checks of program areas, I will talk to scouts in the evenings to see how they are progressing, and I will talk to staff to make sure scouts are showing up. But following a scout around all day every day will not happen. For one thing, it could constitute a YP violation. I spend a week of vacation time and about $220 of my own money to attend camp, so it will be on my terms. I will say that your adult:youth ratio is out of whack, and with the same size troop, we only have 2 adults spending the week. I would hope that the adults in your troop are actively serving the camp in some way, and not reading trashy novels in their hammocks all day. If so, they are just taking up bunk space that could be filled with a Scout, and need to stay home. Our adults are working their butts off all week, serving as staff (I am a BSA Lifeguard Counselor), taking adult training, or providing manual labor to the Ranger such as painting, plumbing and cutting grass. No one I know sits around all week. I guess what I am trying to say is, if you think your son needs 100% supervision (or protection?), then you need to provide it. But I don't think that's doing your son a service. By age 13, he needs to be learning to overcome his disabilities and live in the world successfully without Mom by his side, rather than expect the world to adjust to him. No one wants to deal with an emotionally out-of-control teenager. That's what "mainstreaming" is all about, isn't it? Let me finish with the caveat that I am not a mental health expert...if I have said anything ignorant, I apologize and am willing to learn.

[kenk]

Sorry all, but I think there IS a place in Boy Scouting for special needs boys. I don't think it is unreasonable to expect a troop to take simple measures to make things work for a special needs boy.

 

Letting a boy see the schedule ahead of time, if available, to make him more comfortable. Making sure boys are treated fairly and are allowed to participate. Giving a boy some extra time and space to calm down or deal with the moment. I hope these aren't beyond the reach of the Boy Scout program, especially if the boy's parents are actively involved.

[OldGreyEagle]

First a vocabulary lesson

feign (feen)v. feigned, feigning, feigns v. tr. 1.

 

 

To give a false appearance of: feign sleep.

To represent falsely; pretend to: feign authorship of a novel.

To imitate so as to deceive: feign another's voice.

To fabricate: feigned an excuse.

Archaic. To invent or imagine.

I am not sure allowing one to learn to feign for themself is a good idea or one supported by the BSA mission. Then again there is the word:

 

fend (f nd)v. fended, fending, fends v. tr.

 

To ward off. Often used with off: fend off an attack.

Archaic. To defend.

v. intr.

 

To make an effort to resist: fend against the cold.

To attempt to manage without assistance: had to fend for ourselves until we were rescued.

Now this may be the word that was intended

 

And now for the big butt,

 

All Disabilities are different, I think we all can agree on that. How each troop handles a disability has to be a combination of the problem, the scout and the situation. While the scouting program is designed to provide growth opportunities to all, I am not sure any of us would take a blind scout into the woods, hand him a compass and a map back to camp and tell him dinner is at 6pm

 

I dont think it would be right to have deaf scouts told they were to start the knot tying competition when the turkey call is given.

 

I don't know that much about Asperger's but expecting them to function as a "normal" scout and then live with the consequences is like telling an ADD scout if he can sit still in a 1 square yard area for 1 hour he will be given 5 million dollars and be surprised when he bolts after 5 minutes (if that long). Aperger's kids are easy targets as they dont "look" different, hence the title of the thread "Invisible disabilities", its easy to give deference to kids in a wheelchair, who are blind, quite different when the symptoms are not as obvious. This is an issue which the Troop must agree to work hard with the parents to provide the best experience for everyone involved.

 

 

(This message has been edited by OldGreyEagle)(This message has been edited by OldGreyEagle)

[SheriB]

I do not expect with our leader ratio that any scout should change thier schedule to have a buddy with them, I understand that the schedule may change because of enrollment issues, but that was not the case here. His prerequisites were completed, the only reason he didn't get to go to his selections was because none of the adults would accompany him....and no, they are not working the camp, for the most part I didn't see them doing much of any thing, and the troop paid for most of the registration costs.

"The opportunity was certainly provided." For my son, it was not...he was told that he had to go with the other scouts, not to the merit badges of his choice.

 

 

"But I don't think that's doing your son a service. By age 13, he needs to be learning to overcome his disabilities"

 

That's like telling a blind person that they need to learn how to see

 

...I know that most people can't accept that fact, but that's the way it is. It can't be overcome, but it can be worked with & around, and eventually, he will be able to function independantly.

 

For people with autism, there are certain things that need to be done to allow them to function in the real world, including knowing what to expect well in advance--they NEED schedules. Autistic traits also include STRONG preferences for some subjects & complete lack of ability to focus on others, and, until he is allowed to set & follow his own schedule as an adult in the "real" world, and settle into his subject area, he will neeed guidance & direction along the way.

 

My son is "high-functioning" meaning that his IQ is quite high, not that I'm bragging. It's not so much that he needs someone to hold his hand all day at camp or baby him through the badge work, but that since he has problems with transitioning from one activity to another the Scouters decided that he'd have to stay with the other scouts who were then expected to make sure that he stayed with them & out of trouble. It was suggested that instead of doing that, that one of the leaders shadow him from one activity to the next.

 

For my son, every sensory experience is magnified 100 fold...sounds, smells, tastes, touches...and especially emotional hurts. And lets face it, teenage boys, even Scouts, can be cruel. Even if they don't realize it, their preferences to avoid my son hurt him deeply. He is treated like their baby-brother that they have to drag along to the movies...now imagine that boy's feelings times 100.

 

My son does have Scouting strengths...his patriotism, his leather & woodworking interests, his presentation-making skills (power point, slide shows, computer stuff) Instead of letting his skills be used, he was put into the "bookish" types of mb's that are a real struggle for him. He works on those mb's at home in small stages. He has done all of the requirements for each rank & MB on his own. Without using altered requirements.

 

"That's what "mainstreaming" is all about, isn't it?"

 

Mainstreaming is about EVERYONE getting along, working together, stretching limits. It is about the special needs child learning about "real world" issues, and it is about teh "average" child learning to accept other's challenges & differences & about both of them contributing positively to the group.

 

"I am willing to learn. "

 

That's all I'm asking.

 

[NeilLup]

I've thought about this a bit before responding.

 

I just looked at the Disabilities Awareness merit badge with the idea of suggesting it. Now I don't think that I will. Does your son consider himself disabled? Do you consider him disabled?

 

ADD, Aspergers and other such behavioral disabilities are very tough on all concerned (I don't need to tell you They can be tough for teenage boys who see someone else "getting away" with what they are criticized and punished for.

 

If you can, ask yourself how you would like your son to be treated understanding that, as Scoutldr said, all leaders and Scouts are volunteers and, while promising to follow the Scout Oath and Law, do each have their own problems and worries. You need to talk with the SM about reasonable accomodations.

 

I remember the story of a Troop with one boy with severe ADD. He just couldn't sit still. So he had a signal with the SM and SPL that if it was getting to be too much for him, he would tug on his ear, they would nod and he would get up and walk around the meeting room until he could sit still again. That became the culture in the Troop and nothing was thought about it.

 

But you are right that physical disabilities are relatively easy and satisfying to make accomodations for. Mental disabilities are tougher but there still are many units with Downs syndrome youth where the youth do very well. Emotional disabilities are the toughest of all because those youth can be very prickly and their behavior is inconsistent.

 

In a unit where I was ASM, we had a small boy with a severe emotional disability. He wasn't feeling well one morning, so we left him in camp while the Troop went on a brief hike (I know, I know bad idea.) When we returned, he had cut down a number of trees in this Scout camp. We learned

 

You will need to negotiate the accomodations and keep negotiating. And, as you do, understand that these accomodations may be difficult and unsatisfying for the adult leadership and boy leadership of the unit.

[kenk]

What is Asperger's Syndrome?

 

Aspergers Syndrome is an Autism Spectrum Disorder (ASD). It was first identified by a German pediatrician. Dr. Hans Asperger. in the 1940's, but his work was disregarded until it was re-discovered in the 1980's, and it was not listed in DSM IV until 1994. Autism is a neurobiological disorder that affects an individual's language, social skills, sensory responses, cognitive skills, and motor skills. Asperger's Syndrome (AS) is on the milder end of the spectrum, and individuals with AS may be highly intelligent and/or gifted in some areas. There are anatomical differences in the brains of individuals with autism, mainly in the cerebellum and frontal cortex. These differences have been confirmed by autopsy, imaging, and animal studies. However, there is presently no medical test that can confirm that a particular person has an ASD; the diagnosis is made based on behavior. According to Dr. Marie Bristol-Powers, of the National Institute of Child Health and Human Development, the incidence of Autism Spectrum Disorders, including Aspergers Syndrome, is now 1 in 200. It is more common than you think, and numbers seem to be on the rise for unknown reasons. 75 of people with autism are male.

 

What causes it?

 

We don't know for sure yet. but there is definitely a genetic component, confirmed by twin studies. Our best guess right now is that a genetic predisposition combined with an unknown in-utero factor at 20-27 days after conception (before most women know that they're pregnant) may be responsible. What are the characteristics of Asperger's Syndrome and how would they affect workplace behavior?

 

Language: Difficulty with pragmatics (using language to have a conversation). They may make irrelevant comments, interrupt, or give long monologues on a topic that interests them regardless of whether the listener is interested. They may require extra processing time to understand conversation. People with AS tend to be very literal in their use of language, and may misunderstand humor or sarcasm.

 

Cognitive: Good rote memory, but difficulty with problem-solving and drawing inferences. They have trouble "reading between the lines."

 

Social Skills: Lack of awareness of the unwritten rules of social conduct is characteristic of individuals with AS. They tend to be excessively blunt and honest. This makes them appear rude or obnoxious to others. They have difficulty making eye contact, which can make it appear to others that they are not listening. They are unaware of non-verbal or body language cues and facial expressions, so they have difficulty guessing the thoughts and feelings of others. They have limited understanding of emotions, both their own and others'. Individuals with AS have difficulty grasping the concept of personal space, and may impinge on the space of others without realizing that they are making others uncomfortable.

 

Many AS children lack the ability to have or show empathy towards others. They dont seem to have the ability to stand in the other persons shoes or take another persons perspective. For example, AS children may find it difficult apologizing to another child for hurting their feelings, trying to feel what another person feels, imagining they are somebody else (e.g. a convict settling in Australia), or how they felt during 9/11. AS children require help to recognize the effects of their actions on others and will need to be taught how to identify and respond to emotions appropriately.

 

Individuals with Asperger's Syndrome tend to be rigid in their thinking and assume that other people think the same as they do. They often have a strong need to follow a schedule and/or follow rules. They may respond badly to sudden changes, authoritarian behavior and anger from others.

 

Sensory responses: Individuals with ASD have unusual , often heightened responses to sensory stimuli. Loud noise and certain pitches may be painful. Hypersensitive hearing and an inability to screen out background noise may cause sensory overload or shutdown. Light touch that would not bother most people may be painful to the person with Asperger's. They may "over-react" to accidental or purposeful touching. They may be sensitive to light, and the flickering of fluorescent lights and computer screens may cause discomfort Strong odors can cause problems also.

 

Motor Skills: Both fine and gross motor skills can be affected. Handwriting, cutting, and drawing may be difficult, although some individuals are gifted artists. Ball-handling and other athletic skills are difficult for most people with AS. Because of these characteristics, people with AS tend to have high levels of anxiety. They often feel overwhelmed with sensory stimuli that are beyond their control and confused by social relationships that they don't know the rules for.

 

Do they have any strengths?

Individuals with AS usually have excellent rote memories. They can be very imaginative, and some become successful writers. One in 10,000 people in the general population has perfect pitch; among people with Autism Spectrum Disorders, the incidence is one in 20. Some individuals with AS are talented musicians, in spite of noise sensitivity. Because they are visual thinkers, they may be talented at design, drafting, and drawing. Some people with AS are gifted mathematicians and computer programmers.

 

Some Helpful Hints for Working with Someone with Asperger's Syndrome:

1. Respect his sensory sensitivities.

2. Don't sneak up behind him or try to startle him.

3. If he gets too close, calmly ask, "Would you please move back a step?"

4. Try to state differences of opinion calmly and without anger.

5. If he offends you, tell him that you were offended by what he said and tell him why.

6. If an exchange is getting too heated, take control by trying to exit. Suggest that perhaps you can discuss this topic again when you've both cooled down. Another good strategy is to "agree to disagree."

 

The Americans with Disabilities Act (ADA) requires workplaces to accommodate people with disabilities, but this is much more complex than putting in a lift for someone's wheelchair. Accommodating someone with Asperger's Syndrome requires that co-workers understand the disability, and it will require some effort and tolerance on your part. The talents that these individuals can contribute in the workplace make these efforts worthwhile.

[NeilLup]

Hello Kenk,

 

Thank you so much for the very helpful comments on Aspergers.

 

Math and numbers are part of what I do, so I did want to reflect a bit on your numbers on perfect pitch. I hope this is not picking on your great post.

 

If the prevalence of Aspergers is 1 in 200 and 1 in 20 persons with Aspergers have perfect pitch, that would mean that 1 in 4000 in the general population have perfect pitch just from persons with Aspergers. Yet the number you quote is only 1 in 10,000 in the general population. Does that mean that essentially everybody with perfect pitch has Aspergers or could there be some error in the numbers?

 

Thanks very much.