Thursday, May 27, 2010

Questions About Aspies

I have been pondering some questions about Asperger's Syndrome this week. I do not have answers to these questions. I don't know what the right or best or politically correct answer is (they may not be the same thing).

This was spawned partially due to the fact that a homeschooling mother was telling me she put her (neurotypical) children in a homeschooling activity but every other kid in there seems to be an Aspie, which makes for a different experience socially and in doing the activity they are there to do as a group.

I am a neurotypical person. I don't understand what it is like to be an Aspie child or an Aspie adult. My children are neurotypical.

There are some children I know who have many if not every symptoms of Asperger's Syndrome. I know for a fact some do not have a diagnosis. I sometimes wonder if the others have a diagnosis or not. I am not a doctor and I cannot diagnose but some kids I know are just that glaring that there is no way they are not on the Spectrum.

You may say whether these kids we interact with have Asperger's or not is not my business but I disagree. My kids have to deal with them and their issues and odd behaviors or strange verbal statements or their "off" attitudes. I've been trying to teach my kids good etiquette and how a good friend acts but sometimes these social things are not reciprocated. What can I tell my child other than to keep doing the right thing even when they are ignored, not reciprocated or are treated rudely in return? I tell them to just be good people and do the right thing. I also advise that they can walk away or ignore that person or try to stay as far away from them as possible.

There is certain back and forth, a dance almost, that goes on when two or more people have communication exchanges with each other. It's a strange position to be in when one party does the socially accepted thing and the other doesn't reciprocate or just seems oblivious to the social etiquette norms. I am not talking about neurotypicals who choose to be rude or cold but more overt negative behaviors done by kids who have multiple Asperger's symptoms. If the same thing was done between two neurotypicals one would be labeled a jerk or just plain rude (if not labeled with an explicative profane word).

Should we neurotypicals have a different set of standards for these kids?

What if we don't know if they have Asperger's or not?

Should my kids be giving special exceptions to accept rudeness or other negative behaviors to those with Asperger's?

Do Aspie kids get a pass on rude or negative behaviors if they have a diagnosis?

Should a parent with an Aspie child who has it confirmed by a professional tell other people? Should the parent expect others to treat their child differently (accept negative behaviors)? Examples of who might be told: other parents, volunteer Scout leaders, volunteer coaches, or teachers?

It seems to me if the parent knew the child had Asperger's that certain things could be done to help the child navigate socially. Examples are directly teaching the child about nonverbal communication cues that others use, to teach about volume of the voice, and to try to curb certain behaviors or things shared through oral communication to be easier for others to handle being around. There are some courtesy and etiquette things that seem to me need to be more bluntly taught and more effort applied to execute. I say this about parents helping teach Aspie kids as "doing nothing" or doing whatever they presently are doing is not working for all the kids who seem to possibly have Asperger's. It can get to a point when a person is not just an oddball or a social misfit (no offense intended but I'm not sure how else to describe it) but they are actively making others angry or offending people on a regular basis and seem clueless. Some of these kids and teens are on a road to being isolated if they keep up what they are doing.

Is there any benefit for a child to have an official diagnosis of Asperger's?

Does the fact that a child is homeschooled mean there is no benefit to knowing if they have Asperger's or not? (Meaning, do some people think only schooled kids need a diagnosis?)

In what way might an official diagnosis help the child or teenager?

Would a college student with Asperger's be better off knowing they have it?

Might an official diagnosis in adulthood also help the person?

In what way might a parent benefit from seeking a diagnosis with a qualified professional?

Is there any reason that a parent would not want to know their child has Asperger's Syndrome? I do not accept the answer of "living in denial and not wanting to deal with it" as acceptable.

What does a parent of an Aspie child want a neurotypical parent of a neurotypical parent to know? Do they expect a different set of rules be applied to their child, more forgiveness or more tolerance or (fill in the blank).

Tomorrow I will post some quotes from a book comparing and contrasting what real Asperger's looks like compared to the traits of a gifted child. Some traits of giftedness are the same and some are different.

I suspect some parents think their kids are just smart if not brilliant and don't suspect Asperger's, crediting the different behaviors as being due to their intellectual brilliance. They are impressed with their child's intelligence. Some seem to think everyone else should give their child a pass as the child is different due to just being intelligent.

One example is when a very smart child who only talks to adults does so as the child thinks they are superior to children their same age who they find little in common with. The parents sometimes say this to other parents in a condescending way to explain why their child is not interested in socializing with my child. The truth is, in some cases, that their child has challenges with social skills and is unable to engage kids socially or they may do things that have angered the kids so the kids all want to and try to avoid them. Instead of viewing their child as flawed and in need of assistance to learn to engage socially with peers they feel their child is superior in seeking out more mature or older people to talk to.

Adults who have no choice but to talk to the child (teachers, others who work with kids in organized activities, and relatives) are more kind and will sit and listen to the Aspie child and often will accept them with their negative traits as they are both more forgiving and because they have no choice. (An example is an uncle at a family party who sits and listens to an Aspie child go on and on talking about some obscure topic in a one-sided manner or a teacher who has that student in their classroom.)

If you have opinions and experience please share them in the comments. I feel I need to understand more and want to be educated on this.

P.S. I really want some honest answers and insight. This post is not meant to offend. I'm interested in opening up a dialogue.

26 comments:

K said...

No, kids that are Aspies shouldn't get a special pass for being rude, at least mine doesn't. As a younger child he truly didn't understand that his bluntness was rude. While Aspies might not NATURALLY be able to navigate social situations they are generally very bright kids who can LEARN what is and is not appropriate.
Yes, there is a benefit to being diagnosed. There are medical and psychological therapies that can help Aspies if they are identified as such. There are also academic modifications that can be made to help them succeed.
Once a parent knows their child has Aspergers they can learn more about how aspies function and think and from that it helps to understand how to parent such a child.
In our home Asperger's may be a reason for a behavior, thought or feeling but is not an excuse. Ian is not allowed to use it as a crutch.
Asperger's is becoming the diagnosis du jour that ADD/ADHD was a decade ago. I meet so-called Aspies frequently, I've also known parents who push for their children to be diagnosed as aspies for the special accomodations they get (ie. not timed on tests). Often these kids are very bright brats. Spend enough time with real Aspies and you can spot these kids that are getting a ride on the ASD express from a mile away.
it does a real disservice to the children and families that are dealing with a real ASD.

Amy said...

I agree with K. It used to be my job to diagnose Aspergers, ADHD, etc. before my children were born. I would emphasize though that each child has their own strengths/weaknesses and consequently must take their own path to learning socially appropriate behavior. Every child may not be working on the same skills at the same age; however, it is important for parents to consistently work towards the goal of their child being able to function as close as possible to what is socially acceptable.

I have one child who would probably be diagnosed with Aspergers (although 10 years ago it would have been ADHD). I have not sought testing because I can currently provide all necessary therapy. I have expectations of her, but there are some things I choose to let slide while we focus on a prerequisite skill. Most of her friends' parents seem to recognize where we are at and what we are working on....and have been good about helping to emphasize those things. However, my little one is much younger than your children, and my expectations will continue to change as she grows.

TaraChristiane said...

This is a great blog to learn more about Asperger's.

I have never had my child diagnosed but I do find that many traits apply and many schooling techniques described in books and articles about homeschooling Aspies work well at our house.

About social skills and offenses, I don't think anyone should use any diagnosis as an excuse for rude behavior. However, I do think the world could benefit if people stopped letting other people's behavior ruin their day. I tell my daughter that if someone does something she doesn't like, why let it ruin her day. Just move on. We never know what the other person is dealing with. Could be a bad day, new medicine, a social phobia, a food allergy, something they are aware of and working on but have not mastered yet. We simply don't know.

There are children with autism in one homeschool group we belong to but we don't find them any more unique than anyone else. If someone is being loud, we ask them to lower their voice. If they aren't engaging we don't write them off, just give them some space.

My daughter is often more comfortable with adults or younger kids but we don't think it's a big deal. I have younger and older friends too.

Interesting discussion.

christinemm said...

I didn't provide details from our experience. Suffice it to say just me saying "don't let someone's behavior ruin your day" just doesn't cut it in certain circumstances. Specifically in one case, when seeing the same person over and over in different settings and when what is said is targeted to tear down my kids and other kids, that borders on verbal bullying it is not right, not whether the kid is gifted and not if he has Asperger's.

K has lived here and knows me and my kids and knows this small homeschooling community. It is hard to keep seeing the same people sometimes when there is a conflict like this that is getting worse not better.

Monica Swain said...

I have to be honest. At first glance, I got a tad bit defensive when I read what you wrote. I jumped through hoops to get my son diagnosed. I would say emphatically that a child should be cause without that they won't be able to get treatment and therapies that would be vital to learning all of those skills you are complaining about them not having. Not only is there issues that need to be addressed such as sensory Integration therapy, behavior modification, there is numerous physical ailments that go along with it as well. Neurological abnormalities like psycomotor epilepsy, GI problems, as well as visual and auditory deficits. I like that you are asking question though most people would chalk these children up as trouble makers.

Darlene said...

Okay, I was raised to think that being polite meant putting other people at ease. Never embarassing someone else, no matter how awkward or inept or rude they might be. I was taught that at a dinner party--for example--if a guest were to slurp their soup, my duty as hostess would be to then slurp mine, so as to ensure they wouldn't be embarassed or stand out as odd.

That said, I have always felt that it was my job to understand people, and to respect that not everyone had the same upbringing or understood the same social conventions or had the same awareness of nonverbal cues. When I moved to the South I was very taken aback by people asking me--upon a first meeting--what church I belonged to. This was a taboo subject for "mixed company" as my Mom would have put it--along with sex and politics!

It isn't about giving someone a pass, it's about having expectations that are kind and compassionate and about showing grace in any situation.

But it is my job to make them comfortable. And if I am able to see past that awkwardness I can then enjoy all the other wonderful things brought to the table.

If a specific behavior bothers me, I mention it clearly and without equivocation. I do not hint or imply, I say "I'm sorry, but I am not comfortable with this topic, can we please change it now." And let me be clear, there is a difference between poor social skills and being a mean jerk.

My teen has learned to accept people--typical or not--as individuals. If the individual is interesting or fun or a friend then all manner of strange behavior can be ignored or, even better, cherished as being an interesting and likeable quirk. It's just that person's way.

Again, that is our experience. Rudeness is a deliberate act, so I can't call someone without the skills or ability to act differently rude. I can say that, from nonverbal low functioning autisim to genius aspies, I have found more rudeness and poor social skills in "normal" people. I like quirks, and I and my teen frame behavior in the most positive light.

And I'm not ignoring the very real issues some people have with social interactions, I just appreciate that they are trying, and I enjoy the perspective they have.

Yes, I know the kids who get along better with adults, and since kids are less able to be understanding of any difference I sympathize. Socializing is to teach a child to be an adult, I have no problem with kids finding comfort in the company of people mature enough to be kind.

Yes, kids and adults can have problems with social skills. No, not everyone can learn to navigate those waters adeptly. It is like being upset because a blind person didn't see your outstretched hand a offer his in return. I would be mortified if my child got upset because his deaf friend didn't want to listen to music; and I would be just as mortified if my teen didn't have some understanding of how hard it is for an aspie to really get the social stuff. Yeah, some can learn the basic set of manners, but often--depending on the degree of functioning--it is never really understood. It is always like being in a play trying to remember your lines, and the penalty for a missed cue is being outcast. That is a tremendous amount of stress to live with.

So it isn't that I lower standards for Aspies, it's that I raise standards for the typical.

It would be rude of me to do otherwise.

Jen said...

I tend to agree with other commenters that having a diagnosis or not each and every child needs to be taught how to behave in social settings. My eldest doesn't have a diagnosis at this stage but at 11yo I can see that my dh and I have "trained" a lot of his Aspie type behaviours out of him with our expectations. When he is having a bad day I have not put him in situations he won't be able to handle. Yes, some days I resent missing out on opportunities to socialise for my own sake, but it is not worth putting either him or others in an uncomfortable situation.

I am sorry you are having troubles with a certain child in your community. Could you step in to the situation and "translate" for each child to help the interaction go better? If you "train" the child maybe the parent will get involved, esp once seeing that the situation is not acceptable to all around their child. (And by training I mean saying to the child It isn't kind to say... We don't ... (do whatever it is). Not punishing, just explaining what is and isn't acceptable behaviour. If they are as intelligent as you say then they will get it. I have done this to little toddlers who bite or play rough in mother's rooms. Gentle, firm consistent teaching/training seems to work on them so I don't see how it couldn't on an older child. And it isn't as if you are teaching something that is not socially acceptable.) Hmm, hope that came out clearly and was some help.

Best wishes
Jen in Oz

Rebecca said...

SOunds to me like the difficulties you are having with these potentially autistic kids has a lot less to do with Asperger's Syndrome and a lot more to do with communication breakdowns among the parents in the group.

My daughter has Asperger's and I don't expect anyone to just excuse or put up with her when she behaves rudely, which happens less and less. In fact, I encourage other children and adults to correct her or tell her she's being rude. THat way we can talk about it and turn it into a learning opportunity. This is exactly how my friends who parent nuerotypical children approach teaching social skills.

My daughter has learned a tremendous amount from peers in this manner, things that are hard for me to teach her out of context. And her peers are electing to continue their friendships with her of their own free will, so I feel comfortable that what she is offering to them as a peer and a friend (loyalty, generosity, admiration, great humor, fun) makes it worth it to them to help her with her quirks.

Meanwhile, i constantly check in with the parents of the other children in our groups. They know about her issues and I invite them to let me know if they feel like it's too much on their children or if there are things I could do better to make interactions more smooth. They all recognize that parenting is a little different for me, maybe, but not really so different. After all, we are all trying to help our children navigate sometimes complicated social interactions, and in this we all, parents and children, have our strengths and weaknesses.

If you feel like some children in your group are behaving in ways that is hurtful or damaging to your children, or in ways that make things unpleasant for everyone, I strongly encourage you to speak directly and honestly, not accusingly, to the parents of those children. That models good communication and may increase understanding among the adults in your as well. If honest, non-offensive, direct communication does not work, you may want to consider joining another group or creating a group with kids and parents who do play/communicate well together.

Like I said, I think your situation has less to do with autism and more to do with a communication breakdown among the parents.

Squid said...

The most important factor in interacting with children with autism or Asperger's (or any child, for that matter) is to try to understand their behavior.

In the case of an ASD (Autism spectrum disorder) child, they can have difficulty with theory of mind (projecting what other people might be thinking, putting themselves in their place) and the value of diplomacy. So they may say or do things differently than neurotypical children of the same age.

On the other hand, they also frequently are honest and do not lie.

And here I have to apologize for not having the time to write more. So instead, I would suggest reading these three books by adults with Aspeger's/Autism to gain insight:

-Look Me in the Eye by John Elder Robison
-Thinking in Pictures by Temple Grandin
-Born on a Blue Day by Daniel Hammett

Anthology by parents of kids with autism:
-Gravity Pulls You In, eds. Kyra Anderson, Vicki Forman

Excellent blogs by parents of kids like those you may be encountering:

http://kyraanderson.wordpress.com/
http://daisymayfattypants.blogspot.com/
http://kristenspina.wordpress.com/
http://hyperlexicon.blogspot.com/

Good luck.

Louise said...

I think the big question is this: why do some parents choose to homeschool? Many I know do it because they think their child is "different" (more sensitive, more creative, more intelligent, more special) and that the public schools are an oppressive place full of bullies and boring "cookie cutter" lessons. Since lots of kids with Asperger Syndrome are sensitive, creative, intelligent, and "different," homeschool groups are overrun with them, often times because the child has had a bad experience in the public schools (bullying maybe) and the mother has pulled him out.

Asperger Syndrome is a neurological condition--we're not talking about a child who is "flawed" or behaves badly on purpose. I would suggest that homeschool groups add a new subject--social skills. All kids can benefit from this, and if done properly it will certainly help with some of the issues you describe. After all, isn't the point of a homeschool group to get kids together to learn in a new/different/creative/positive way? Rather than target certain kids for their poor social behavior, why not help them? There is a book out now called "Quirky, Yes, Hopeless, No" that breaks down some of the issues these children face and how to address them in a class.

There is no benefit to having an Asperger diagnosis if the parent is not going to work with the child. The public schools can provide wonderful assistance in many cases, so homeschool groups should step up to the plate on this issue if they expect to be considered "better" than the public schools.

Emily said...

Hi, new reader here. I'm a former homeschooler. I also like John Holt & John Taylor Gatto.

My brother was diagnosed with Asperger's in elementary school, so I'm familiar with the issues you're asking about. It's great to see someone genuinely curious & willing to ask thoughtful questions. There should be more people like you!

I'll be posting several comments because I've gone over the character limit about 5x now...

"Should we neurotypicals have a different set of standards for these kids?" Yes & no. That is, if a kid with AS behaves rudely, the behavior's still rude, & you have every right to feel annoyed. However, understand that a) the child may not know he's being rude, b) the child may know, but not know how to behave differently, c) the child may not be able to perceive her own behavior (for example, to recognize that his voice is too loud, or she's getting in someone else's space). Most of all, the child may behave badly for reasons other than rudeness. For one, people with AS may experience sensory overload where they can no longer process incoming information, & may go into fight or flight. As a neurotypical, the one essential adjustment is to understand that while the BEHAVIOR may be rude, the MOTIVATIONS are probably well-intentioned, & not what you assume.

My brother doesn't get a free pass. When he does something rude, we tell him, & painstakingly teach him what to do differently. Yet he needed a teacher who understood why he behaved as he did & offered support, not anger & condemnation. He needed classmates who could just roll their eyes, think, "that's just him again," & start fresh the next day. This understanding has let him improve his social skills. His classmates never became BFFs with him, but they like & respect him.

This can be a great learning experience for your kids. :) Consider explaining to them why the child behaves that way, & suggest ways to handle the situation. These may include calmly telling the kid with AS they just said something mean (they might really not know), or walking away for a while.

I don't know the details, but you may want to talk to the AS kids' parents in a nonconfrontational way. Talk about your observations of their kids' behavior in a descriptive, neutral way & ask for more information, with your attitude here of wanting to understand more. Ask them what you & your kids can do to have better interactions with them. Most parents of AS kids are used to being attacked, so even if they feel defensive, they may be mollified by your genuine concern & interest.

Parents of kids with AS are often observant, sensitive people. They know that, left unhelped, their kids will become isolated. To help their kids adapt to the normal social world, they deal with endless therapies, special diets, & just trying to figure out what happened during the school day so they can coach their kids through it. Most of this goes on behind the scenes, but rest assured, these parents are unsung heroes. Some good AS mom blogs: http://asd2mom.blogspot.com/ http://daisymayfattypants.blogspot.com/ http://storkdok-nos.blogspot.com/ http://mamabegood.blogspot.com/

Emily said...

Some thoughts on diagnosis...

An official diagnosis can help someone at ANY age. As a parent, understanding the reasons for your child's behavior can help you understand how to teach them, & whether they can meet your present expectations. Reframing what looks like willful or passive-aggressive behavior as a response to a world that often seems irrational & overstimulating can help defuse power struggles. As for adults, I think these quotes speak for themselves:

After about 15 minutes of reading about AS, my jaw dropped to the floor. I said very audibly in the store, 'Hallelujah!'...I felt an immense wave of relief wash over me as everything suddenly made sense. I looked back over my life, [through] all the painful memories that could now be explained...Getting a diagnosis can be a very cathartic experience...Those hidden barriers between you & others that seemed like a mystery over the years will finally be understood...It made me feel both better & worse knowing that I hadn't meant to disturb or hurt anyone. -Nick Dubin, in Asperger's From the Inside Out

For me, the greatest gift of the term Asperger’s syndrome is that it has given me an identity. -Nomi Kaim

I bought a book of essays on the condition...and devoured it with stunned fascination...I felt as though I had stumbled upon my secret biography. Here it all was--the computer-like retention, the physical awkwardness, the difficulties with peers & lovers, the need for routine & repetition, the narrow, specialized interests...had they created a developmental disorder just for me?...I wouldn't wish my condition on anybody...yet I am also convinced that many of the things I've done were accomplished not despite my Asperger's syndrome but because of it. -Tim Page, in Parallel Play

Two years after diagnosis, my relationships have been more civil towards [my coworkers]. I believe they improved because I learned to be easier on myself & others for our imperfections. -Jason Zervoudakes, in Asperger's From the Inside Out

An official diagnosis lets you take advantage of supports offered by school, college, or professionals who help those with AS. It also lets insurance pay for the many therapies used to help these kids (social skills, speech & language, etc). In-school supports might be less relevant to a homeschooler, at least til college, but the rest still applies.

"Should a parent with an Aspie child who has it confirmed by a professional tell other people?" I think it depends on the type of support the kid needs, which depends partly on the severity of the AS, & partly on the context of their relationships with others. I don't think parents should indiscriminately tell everyone, especially in front of the child--you can imagine how that'd make her feel. But it can be helpful for teachers & other family members to know. Usually, one needn't state the diagnosis. To advocate for your child (or yourself) you need only say something like, "He may not be able to stay for the whole party at Loud Restaurant because he's overwhelmed by loud noises, but maybe he can sleep over afterward?"

Emily said...

BTW, both my brother with Asperger's & I were "diagnosed gifted," & preferred to talk to adults. It's a common misconception that a child can't be gifted AND have a disability like AS. Neither is necessarily a misdiagnosis, & a child can be isolated from peers for both reasons at once. Also, while they APPEAR to feel superior, gifted kids are more likely to see themselves as INferior because they're different.

When evaluating gifted vs. AS, consider the following questions:
-When the kid talks to adults, is he charming & personable (even if the topic is odd or geeky)? Does the adult seem to enjoy talking to the child, or does he want to get away as soon as is polite?
-If the child chooses to talk to age peers, what happens? What behavior causes him to be rejected? There's a difference between someone who can't relate because she wants to talk about the meaning of life instead of Barney, & someone who can't relate because she can't read or make appropriate facial expressions & body language.

A kid who thinks more quickly, complexly, & abstractly won't just apply it to academics. It'll affect everything they think about & perceive, from TV shows to friends' behavior. It fundamentally changes the way they think & feel, which can make them feel different no matter HOW good their social skills are. They may even want different things from friendship than their peers do (http://www.hoagiesgifted.org/play_partner.htm). Furthermore, from a young age, gifted kids are forced to choose between being themselves & being liked, an excruciating choice even for teens & adults. (See http://www.sengifted.org/articles_social/Gross_TheMeBehindTheMask.shtml)

Here's an example of a gifted kid with a much more sophisticated social understanding than his peers: http://www.davidsongifted.org/db/Articles_id_10172.aspx Of course, not all gifted kids are socially skilled, but the usual indicators won't tell you whether they are or not. Even professionals, & gifted people themselves, can have trouble telling. From the outside, you just don't know, & on this subject, their parents may know something you don't.

Some good books:
Freaks, Geeks, & Asperger's Syndrome by Luke Jackson, a teen with AS.
Pretending to be Normal by Lianne Holliday Willey, who was diagnosed as an adult.
Asperger's from the Inside Out, by Michael John Carley, a practical guide from an inside perspective.
The Complete Guide to Asperger's Syndrome by Tony Attwood.

Sorry for the length of my posts. Hope they're helpful! Looking forward to further discussion! :)

Karen said...

I'd add an issue that hasn't been addressed. It could also be that the parent is on spectrum herself. Diagnosis in some adults can be difficult because they've learned coping mechanisms that let them "pass" in many situations. They may or may not even be aware of their own Asperger's (or near Asperger's) traits as such. Many adults only seek diagnosis after a child is diagnoses and the other parent notices that the child and parent share a number of traits that are part of what garnered the child's diagnosis.

It's not as if Asperger's is new or popped out of nothing. People with Asperger's have been around for a long time, and diagnosis started in the mid 1940's. There are plenty of adults out there who have Aspie traits or who would qualify for a diagnosis.

An Aspie parent taking part in a high activity, social setting with a kid who is having a difficult day may well shut down herself. It could be too much social stress or too much sensory stress.

Such a parent is trying to do the best for their child and it may be okay much of the time, but as with a child with these issue, the line may be crossed. A young child is likely to express this by what is perceived as a tantrum. An adult is more likely to withdraw. This may be physical, or it may be mental, as they do their best to regroup. Mental is more likely if leaving with the child is likely to trigger a "meltdown" in the child and exacerbating the problem.

As with the child though, it's unlikely to be intentional. It's easier to avoid situations you know are an issue. Having children, AS or NT means a whole new set of experiences, time and again as they grow.Learning about a new stressor is never fun for anyone.

Then again, it could be that an NT parent has shut down to a certain degree because the stress of the whole situation is too much and they don't have good support. I've known parents in this situation who were afraid to ask for help becuase they are already hyper-aware of the judgment that they are failing in parenting.


I know you didn't intend to be offensive. To let you know, the thing that is probably the most likely to offend would be this: "It seems to me if the parent knew the child had Asperger's that certain things could be done to help the child navigate socially," along with what directly follows. If it was only that easy, or that linear.


Regarding adults who will be more kind because they have no choice but to deal with the Aspie child is a little iffy too.

Some of us will sit with the Aspie kid and listen because we're interested in them as people and don't see the traits as negative, merely different. I personally don't find they go on and on in a one sided manner once they realize that you'll actually engage them where they are starting from. The conversation may spiral a bit, but it will move. I use my own social skills to help me observe and learn how to help turn it into a conversation. This is not necessarily something that's easy for a kid to do with another kid. This could be one of the reasons that Aspie kids like conversations with adults more - adults can help them structure the conversation.

I tend to attract this sort of kid over to talk with me a lot. :) Or maybe they just wander in my general direction and stay after I give them a less typical reaction.
Either way, it's good.

I know plenty of NT people who have traits that can be equally or more annoying, just in different ways, so I don't see it as the Aspies getting a pass.

I'll freely admit to being from a family with plenty of Aspie traits across multiple generations, though no diagnosis in anyone. It would neither surprise nor dismay me to have someone in the family get a diagnosis.

I could see an official diagnosis being useful in institutional educational settings if certain traits were present. I could also see it being useful in getting certain types of therapies to deal with specific problems.

christinemm said...

Thank you to everyone who responded. I was out of town yesterday all day, in NYC for a Book Blogger Conference which was interesting. I came home late at night to lots of replies but was too tired to respond.

I really appreciate all this insight. It's incredible.

Like Karen said I agree, there are times when an adult truly is happy to engage a child with Asperger's. I didn't mean to sound so negative about that. I myself have sat and talked with some kids who seem to have Asperger's and am glad to be able to have dialogue with them. Those conversations were intelligent and polite and just good conversation. My heart also goes out to the nice kids who are able to socialize with adults like that but are unable connect with same aged peers (or anyone relatively near their age).

I was trying to say (maybe not well stated) the issue when a child is in the presence of other kids but won't interact with them and goes to adults instead.

The more I think of the major issue I'm grappling with the more I realize that I might be looking for an excuse. I usually would just look to the issue and hand and deal with it, such as rude exchange, hurt feelings and deal with that between my child and the other child by bringing it up to the parent.

I do really think the child might have Asperger's and was looking for a reason why he seems to act so socially inappropriate and why he seems to not have a clue that intentional actions he does is angering others and alienating him. I was thinking if he got the diagnosis it would help remediate his future interactions with specialized parenting instruction as whatever they are doing now is not working.

99% of the time, I was dealing only with my kids trying to teach them how to act proactively, in the moment, and after, to keep them from not getting so angry. It is hard to teach kids to deal with an issue when it's all one sided.

No huge thing had happened enough for me to think I need to get involved and confront the mother. I am trying to back away from being the overly-involved mother, especially given the kid's ages (13 and 12).

I do think my kids need to handle their own affairs. But I have to deal with hurt and angry kids in the aftermath.

Recently I did tell the mother about something that happened (the day after it happened) and she was not happy to hear it. She asked her son said it didn't happen that way. It was a clear cut thing and either my son had it all wrong and was mad for nothing or her son intentionally lied. Hmm.

Oh this is NOT EASY!

Karen said...

Here is the blog post I referred to. I thought you had seen it, and I was right - you commented on it. :)

http://ragamuffinstudies.blogspot.com/2009/08/life-from-outside-reflecting-on-aspie.html

Louise said...

"Recently I did tell the mother about something that happened (the day after it happened) and she was not happy to hear it. She asked her son said it didn't happen that way. It was a clear cut thing and either my son had it all wrong and was mad for nothing or her son intentionally lied. Hmm."

This sums up completely what you may not understand about differences in Asperger children. Because this boy saw the incident another way does NOT mean he "intentionally lied." Asperger kids see things differently. In many ways it is a gift. These kids can be very creative, inventive thinkers. On the other hand, the fact that they see things differently can get them into trouble, especially socially.

It sounds like you are very frustrated with this child, and it breaks my heart. If I am correct, you are thinking, "Hey, this kid has something wrong with him and the mother is doing nothing about it. Meanwhile, this kid's problems are upsetting my child, and I don't want my child to be upset." You said this suspected Asperger boy hasn't done anything horrible, so I'm not sure why your child is getting so upset. The best approach might be to help your child understand that this other boy is not trying to be mean or hurt his feelings, but that this other boy is simply different. You can also encourage your child to speak directly and kindly to this suspected Asperger kid when something hurtful is said. Your child can take the other boy aside and quietly say, "Dude, that kinda hurt my feelings," or something along those lines, rather than run to you and cry/tattle/complain. These kids are old enough to work together and try to solve these problems in a reasonable way. Help your child to not take these things personally, and to understand that this other child might seem rude or mean, but it's because his brain works differently and not always in a way that makes sense to your child. Meanwhile, look for the good things, not the bad!

Unfortunately, having a diagnosis does not mean the child is miraculously better or is getting some kind of great help that will make a massive difference. Where I live there is not much available outside of the public school system. It's all up to the parents. But a mother can only do so much, and there is no magic solution to the challenges facing kids with Asperger Syndrome. We work hard every day to help my Asperger son with appropriate social behavior and still he does many of the things you describe. What we rely on is the hope that others will accept my son's differences and know that he is not being intentionally rude. Compassion is key.

The world is full of oddballs and different people, Asperger or not. Your current situation could be a wonderful learning experience for your child. You won't be able to change this other boy, but you may be able to help your child grow from this experience. If you can move beyond your bitterness and anger, you might be able to help your child find a way to embrace this other child, befriend him, and meet him halfway somehow.

christinemm said...

Hi Louise, thanks for writing.

To be clear I will give a very similar example because my attempt to not give details is confusing people I guess.

I will make up an example that is similar but won't reveal to local blog readers who this kid is.

The group of kids was supposed to paint a stop sign. In our culture the stop sign has to be red in order to be used on city streets as that is the way it is in our culture and rules. The kid insisted on doing the painting of the background. The kid refused to paint it red as he says he prefers it blue. So the kid painted it blue. He also said in his family they only use blue stop signs and he doesn't care what the rest of the country does for their stop signs. In the end, the sign could not be used as the stop sign must be red. So the group is mad at the kid for painting it blue. No one could pursuade him to not paint it blue and to paint it red and he was not polite with his communications either.

So I ask the mother if in her family they really do things that differently and don't use red stop signs and she says no way they use red stop signs and why would her child ever say that? So then she asks her child and he says "I was not the one who did the painting it was some other kid who did it, and I had nothing to do with how the sign wound up blue." Now either my son is incorrect in the entire story of how the sign got blue or the kid intentionally lied to his mother.

I know of two other circumstances recently where the kid bragged to his peers of deceiving his parents by lying. So that's what I know of his feelings about lying to his parents...

You know what? I am annoyed with this incident and I'm angry.

I don't even know if he has Asperger's but it is just so bad at this point and I'm a bit sad if he has it and it's not being addressed.

One issue is my son is now trying to back out of good things he does with groups to try to get away from the kid as much as possible. My kid should not let himself be intimidated by his peer.

This is hard when moving in small circles.

Well thanks everyone you gave me the courage to not back down. Rather than turn the other way I'm going to really pay attention and will discuss this with the mother should anything else come up. I'm not going to be afraid of what happens.

I will also keep talking to my kids about what they can say when this kid insults them verbally. He needs to be addressed peer to peer more directly I think.

Also rules of behavior for group activities we do should be applied not just having rules but not applying them out of fear of ticking off the parents.

Karen said...

Yeah, that's not a communication issue, which is the impression I got from the original.

Was there any adult input into the group activity? This is a situation where I would suggest to my kids that input from an outside party might help with the impasse.

Having AS does not mean always getting your way.

What I tend to see in situations like this is that other people don't want to deal with the meltdown likely to follow a flat out no, you can't do that. That's as much the problem of the people who are giving in to avoid conflict as it is with the person doing it. If it happens enough, even someone who doesn't read social situations well will learn it's an effective way to get one's own way!


Having adults/older kids around who are willing to deal with such melt downs without making a big deal of it , to help a kid to step back to regroup and to welcome the kid back into the group once he's done so, can go a long way to mediating such conflicts for everyone.

It won't be total fix, and probably won't happen in a linear fashion, but this tends to help smooth out such group interactions over time. It can help everyone's social skills. If there's overlap in social circles it can have a ripple effect as well, as the kids with the problems then have more people they can trust in other groups.

Ideally, it is best if the kid's parents support the move away to regroup, rather than ignoring the behaviour or running away from the situation by leaving with their kid. It helps the parents to know that they aren't being condemned if the adults who are directly involved calmly make it clear and audible that the child is welcome back when he's a little calmer.

While I can's say as I've got anything other than anectdotal experience, I've done this effectively with kids this age and younger in my home and in very mixed age settings with other like minded adults. It's not a quick fix, but I've seen improvement in the group dynamic pretty quickly on all sides. It also gives NT a model that doesn't put down the kid having a problem and some ideas they can carry forward.

Corina Becker said...

(part 1)
Hi, I'm an autistic adult, diagnosed with Asperger's. My friend Liz Ditz passed this along to me, thinking that I could be of help. (I just got back from an anime convention, and am still recovering from the overload and sleep deprivation, so please excuse any mistakes/politely tell me if I'm not making sense).

You have a lot of questions, and I'll do my best to cover all of them.

I don't think that neurotypicals (NTs) should have a different set of standards. I don't think that the diagnosis of ASD, ADHD, or anything really, is an excuse for a child to not try to reach the same standards as others.
It's one thing if a person is proven to be unable to reach a standard or a task, but unless that happens, it's not an excuse not to try.

Now, these are kids that are being homeschooled. Like you, their parents have for one reason or another, decided that home schooling is a better place for their children. It might be that regular classrooms and even special ed classrooms are too much for them to handle.
That being said, if these kids are going to be in any way independent and interact with mainstream society, they need to know at least basic manners and social skills. If not, then they will be hampered by their lack of skills, and may even be set up to be institutionalize.

Then it's a matter of whether or not the kids really are autistic or not. It could be a case where some of the kids are rude. Then you deal with it as you would with any other child: talk to the parents.

If the child is autistic, there are reasons to disclose that information, and reasons not to disclose. The benefit of disclosure is that if the kid is trying really hard, and does mess up, there is more understanding and support. The potential downside is that there may be some discrimination, either from other children or from parents.

As you've pointed out, disclosing can lead to a lot of supports, even if it's just a general understanding that the child has trouble and doing what can be done to help.

Corina Becker said...

(part 2)
As for the benefits for a child to have an official diagnosis of Asperger's, well, it depends where you are. In some areas, Asperger's is considered a disability and there are accommodations and supports. However, not every where. I live in Canada, and I know a few autistic people who were diagnosed as high-functioning Autism, instead of Asperger's (it's the same thing, really; the only difference seems to be less noticeable difficulties with verbal skills, although someone with AS can be dysfunction-ally verbal: can speak, but not very good at getting things across).
This is so that the person can access services that would otherwise be denied. In Canada, there is a legislative in the process of being passed that will get Asperger's to be qualified for services, which will bridge the gap between now and when the DSM-V comes out (Asperger's has been combined into Autism Spectrum Disorder).

I'm not entirely sure that there is no benefit to knowing whether a homeschooled child has Asperger's or not. If the child requires outside assistance at times, then yes, it is very helpful to know.

It would also probably be helpful to know about the learning method they are using for the child, so that you can also help out when you see the child is needing assistance, or can prompt the child with social skills, and maybe even offer to have the child over to give the parents and caregivers some respite. This would also have the added bonus of exposing the child to more social situations where he/she can practice and develop skills.

As for college and adulthood... well, I was diagnosed in my late teens. I would have benefited greatly from knowing much sooner that I am autistic, just even so that I know. It has taken me seven years of self-learning to understand how being autistic affects my ability to communicate, social skills, sensory issues and general hygiene. That's development that could've been done as a child. Also, knowing that I am autistic earlier could've helped me to navigate the minefield that is the teenage years, whereas I was in meltdown every day. With an early diagnosis, I figure that supports for me would have been put into place a lot sooner, so that I wasn't being overloaded. And that would have saved me a lot of mental grief alone, not to mention helped me with my academics.

When I was in university, I would give a little talk to the tutors and staff of the Special Needs Office, to explain how autism affects my studies and every part of my life.
So I would say that it is extremely useful to know, throughout the lifespan, because it affects everything.

I'm not entirely sure why a parent would deny the diagnosis. Maybe they still believe there is a stigma involved with ASD. But I know that high intelligence is not a pass that says the child does not has Asperger's. Take myself for example: I'm a brightly, fairly social female who as a child would talk to adults and even laughed at adult level jokes. And I'm most definitely on the spectrum.

christinemm said...

This is possibly the most enlightening comments section I've ever had for a blog post of mine.

Corina your detailed response is so eye-opening. I appreciated hearing your perspective as a person with Asperger's, how getting the diagnosis affected you and about your experiences as a teen and student.

Thanks again EVERYONE--since I've not said thank you after each comment was posted--I really do appreciate it!

Jen said...

I must admit as a mother of an undiagnosed, possible Aspie that this has been a very interesting discussion. Thanks for being a Thinking Mother, instead of just venting and walking away without considering the other views out there.

BW
Jen in Oz

Persuaded said...

I haven't been able to read all of the comments.. that said, I absolutely adored what Darlene said. She's obviously both kind and wise and I wish she was my next door neighbor.☺

You know, I have a daughter with Down syndrome. Her speech is very poor, very unintelligible. If she were in a group with your child, how would you counsel your child to act towards her? I imagine you would explain that she has a condition that affects her speech as well as her learning and behavior. I imagine that you would encourage your child to be kind and understanding and to include my daughter as much as possible. For example, she'd probably be right in the middle of a game of ball, or dolls, but discussion of the latest new book? Not so much. ANd that's OK... after all, I want your kid to have fun too. ☺

You state that parents of Aspies should teach their child appropriate social skills and behaviors, as if an aspie's poor social skills indicates a deficit in the parents efforts to teach. Would you state that I as a parent of a child with Down syndrome should teach my child to speak correctly, and if her articulation and vocabulary are poor, assume that it is due to some negligence on my part? I doubt it. I am also the parent of a daughter with Asperger's syndrome. That girl has unintentionally offended more people than I can possibly keep track of, lol. We teach and teach and counsel; we advise and train over and over again, but just as my daughter with Down syndrome will never articulate her words correctly, my daughter with Asperger's will never be able to interpret social cues accurately. She'll improve, but she'll always be off. And you know what? I'll bet you dollars to donuts that she puts more effort, sweat and tears into her social skills than your neurotypical kid does. I know that as her mom, I certainly do.

What do I want you to teach your child as he relates to mine? Compassion.

christinemm said...

Hi Pursuaded, thanks for sharing your opinions, perspective and experiences.

I most certainly do teach my children compassion, and empathy.

The fact that they have a nephew aged 10 with Autism (severe) who can't even speak, who they love but can't communicate with, has done more to teach them than anything I could have taught only with my words speaking about people we are less close to, and do not love as only family can love each other.

The kid that inspired this post, I don't know if he has Asperger's or not. I really think he does but I'm not a doctor or psychologist... I am fairly certain the family has not sought a diagnosis. The parents don't tell anyone he has the diagnosis and they don't expect anyone to give the kid a pass or go easier on him for the various infractions and mean-ness.

Actually since writing this post more stuff has happened to lead me to believe he is turning out to be more of just a bad-acting person than a person with a diagnosis that cannot help what he is doing. He makes many choices that are rude behavior that are clearly CHOICES such as intentional name calling and now bordering on bullying behavior, targeting a certain person to pick on over and over and over.

I don't know if you homeschool or not but we are in a different situation with homeschooling as a bunch of families who are basically all in each other's faces a lot of the time. It gets so hard sometimes to be almost enmeshed with these people over so many years that honestly I have been thinking how great it must be to have a child in school, not know what goes on there in the classes or socially on the bus or whatever and to also never have met most of the other parents to have to deal with them either. I think if I had my kids in school I'd like other kids more and think what went on in the classes was so great. With homeschooling when I'm witness to an academic class in progress that we've paid a teacher to teach to our kids I see a lot that parents of schooled kids will never see and it isn't all pretty.

Persuaded said...

Christinemm... yes, I do homeschool☺

And as I read over my previous comment, I can see that I sounded a bit... harsh maybe, and I do apologize for that. I would never want to imply that you're not teaching your children compassion... so yeah. I'm sorry. Please forgive me♥

I think the point that I was trying to make is that Aspie kids are in the same position as kids with other developmental disabilities. I remember an ahah kind of moment with my daughter. We had happened to see one of her acquaintances at McDonald's and she insisted that this other child was giving her "mean looks." Believe me the kid was doing nothing of the kind- she was actually kind of blandly indifferent to my daughter. But because her facial expression wasn't over the top friendly and happy, my daughter couldn't read her and consequently concluded that she was being unfriendly. I remember thinking, "It's like she's retarded, but socially." This was in the early 1990's, long before I ever heard of the term Asperger's syndrome. I had worked with the developmentally disabled for years and was well acquainted with retardation however. That was when Louisa was 5yo, and little did I know how spot on the whole "retarded socially" thing was. Although she has improved immensely since then, she is a real challenge to relate to much of the time. When helping her siblings to interact with her and deal with her (and her shenanigans;-D) I liken it to how they deal with their other sister who has Down syndrome. Both girls have their limitations and will need understanding. Both girls also need clear boundaries.

I hope that made my thoughts a bit clearer... and hopefully in a kinder and more diplomatic manner this time! ☺