My kid's school system does not seem to test well for Asperger's Syndrome

[Rich Gray]

Dilemma:
[*] We are in America.
[*] I think that my daughter Katelyn has autism (Asperger's Syndrome).
[*] The school system does not test well for Asperger's Syndrome.
[*] The level of autism (Asperger's Syndrome) Katelyn and I have is not seen by people.
[*] Camouflaging Asperger's Syndrome is a ubiquitous defense mechanism practiced by those who have it.
[*] Boys tend to become more boy-like (I am aggressive, but not violent), and girls tend to become more boy-like. Boys are easier to identify than girls. Girls are difficult to identify.
[*] My education and development suffered for being invisible to teachers as someone with Asperger's Syndrome. To be fair this was not widely diagnosed in America until 1994.
[*] I would have benefited from teachers teaching me about the way my brain works, and the way social interaction works.
[*] I went to a psychiatrist who must be new to Asperger's Syndrome.
[*] He did not know that a school testing for autism is not the same thing as a psychiatrist testing for autism.
[*] He told me that he did not know how to help, and that he was confused.
[*] I am not sure whether or not to cry, or hit my head against the wall.

[*] I want Katelyn to know about her brain.
[*] I want Katelyn to formally learn about social interaction.
[*] I do not want Katelyn or her teachers to assume that she will figure out social interaction on her own.
[*] I do not want Katelyn to spend time self-teaching herself social interaction when she should be learning other things, using less effort.
[*] I want Katelyn to learn how to study.
[*] I want Katelyn to learn that she has a camouflage, and that is takes unconscious energy to upkeep.
[*] I want Katelyn to learn how to turn off the camouflage.
[*] I want Katelyn to learn that it is okay to be herself without any camouflage when she wants to be.
[*] I want Katelyn to focus on working towards her potential, and not working towards blending in.
[*] I want Katelyn to be glorious and shine for the world to see.

----

My History:

[*] I have Asperger's Syndrome.
[*] I struggle with reading body language and facial expressions.
[*] I do not flap my wrists, rock back and forth, or whip wooden Thomas the Train Engine toys at my teachers (one of my wife's students would do this).
[*] I have the ability to blend in as a neurotypical rather well.
[*] I use unconscious mental energy to maintain this neurotypical camouflage.
[*] I use unconscious mental energy to attempt read facial expressions, and body language.
[*] These are not the same skills that a neurotypical develops. These skills comes naturally to neurotypicals. They require much less mental energy, and are likely effortless to neurotypicals.
[*] I struggle with audio based learning. Working in large groups without the written word, or the ability to take notes is frustrating.
[*] I would have benefited from reading, writing, and note taking before I was 9-years-old. At age of 9 reading, writing, and note taking becomes the standard in school.
[*] When I was 6-years old I struggled with reading and learning. When I was 8-years old I was reading at the 6-year-old level. By the time I was 13-year-od I was reading at the 19-year-old level.
[*] Aside from my poor spelling skills, I did quite well academically. I never really studied anything. I did not understand the concept.
[*] I blended in, and my teachers were happy with me doing so.
[*] I blended in to protect myself out of fear of interacting socially.
[*] None of my teachers reported that they expected anything other than dyslexia, and/or ADD while I was younger. These are common components of Asperger's Syndrome.
[*] Dyslexia, and/or ADD was never mentioned in high school. I was told immediately (like the third day of high school) that I did not belong in special education.
[*] I showed up to high school and got a diploma. It was 100% effortless.
[*] Studying was something I did not know how to do.
[*] Math was a puzzle for me, as it required actual study. I was not bad at math, I just needed to put in effort. I did not realize this until I was in college.
[*] Naming concepts is difficult for me. The process seems to be useless in understanding concepts. Teaching them to others, and discussing them with others is when naming concept are useful. So mostly they are not useful to me.
[*] I was not ready for college. I did not understand myself. I did not understand my brain. I did not know how to study.

 

[AO1501]

This was not easy to read in that format, but I think in terms of your dilemmas and history, many of us will see ourselves and understand.

I think you are likely to have a problem in terms of Katelyn and the education system she is within, because public policy seems to point to public education receiving less and less funding in real terms, so the kind of individualised self-learning you hope she can achieve is not likely to come through school, but through you working with her to help her find herself and realise how her mind functions, and how to interact with the world, including school and people, around her.

You don't need a diagnosis for this. As her father there is no one likely to know her and her behaviours better than you do. As long as you are careful not to project your Asperger's onto her, your observation of her would in most situations be much more telling than a psychologist's.

There is nothing to prevent you telling the school that you have Asperger's and you think your daughter may too, so they can take that into account in their interactions with her, and to ensure that they keep you informed about any issues she has in class, either in studying or interactions with classmates and teachers. That way you'll be able to handle anything that you then feel is going badly, or might require your intervention.

Your role in guiding her through life skills, including managing and coping with Asperger's if you believe she does have it, is irreplaceable. Particularly since many of the life skills that may seem obvious, such as blending in when needed, and standing out when desirable, are not Aspie alone. Every child need this kind of guidance from those they trust. And you have the advantage of knowing the parts of life where you had problems, and can therefore guide her in handling those too.

I envy you the opportunity to do that. My daughter was well beyond childhood when she was diagnosed with Asperger's. If I had known when she was young, there is so much I could have done to help her rather better than perhaps I did.

 

[Butterfly88]

I agree that you could mention to the school that you have Asperger's and think she may have it. Also, it's not considered Asperger's anymore, now it's ASD level 1.

 

[tducey]

Good luck, support for kids with Autism seems to be lacking a little in the schools here in Newfoundland as well. Things seem to be picking up as of late though but still room for improvement.

 

[Mary Anne]

Dilemma:
[*] We are in America.
[*] I think that my daughter Katelyn has autism (Asperger's Syndrome).
[*] The school system does not test well for Asperger's Syndrome.
[*] The level of autism (Asperger's Syndrome) Katelyn and I have is not seen by people.
[*] Camouflaging Asperger's Syndrome is a ubiquitous defense mechanism practiced by those who have it.
[*] Boys tend to become more boy-like (I am aggressive, but not violent), and girls tend to become more boy-like. Boys are easier to identify than girls. Girls are difficult to identify.
[*] My education and development suffered for being invisible to teachers as someone with Asperger's Syndrome. To be fair this was not widely diagnosed in America until 1994.
[*] I would have benefited from teachers teaching me about the way my brain works, and the way social interaction works.
[*] I went to a psychiatrist who must be new to Asperger's Syndrome.
[*] He did not know that a school testing for autism is not the same thing as a psychiatrist testing for autism.
[*] He told me that he did not know how to help, and that he was confused.
[*] I am not sure whether or not to cry, or hit my head against the wall.

[*] I want Katelyn to know about her brain.
[*] I want Katelyn to formally learn about social interaction.
[*] I do not want Katelyn or her teachers to assume that she will figure out social interaction on her own.
[*] I do not want Katelyn to spend time self-teaching herself social interaction when she should be learning other things, using less effort.
[*] I want Katelyn to learn how to study.
[*] I want Katelyn to learn that she has a camouflage, and that is takes unconscious energy to upkeep.
[*] I want Katelyn to learn how to turn off the camouflage.
[*] I want Katelyn to learn that it is okay to be herself without any camouflage when she wants to be.
[*] I want Katelyn to focus on working towards her potential, and not working towards blending in.
[*] I want Katelyn to be glorious and shine for the world to see.

----

My History:

[*] I have Asperger's Syndrome.
[*] I struggle with reading body language and facial expressions.
[*] I do not flap my wrists, rock back and forth, or whip wooden Thomas the Train Engine toys at my teachers (one of my wife's students would do this).
[*] I have the ability to blend in as a neurotypical rather well.
[*] I use unconscious mental energy to maintain this neurotypical camouflage.
[*] I use unconscious mental energy to attempt read facial expressions, and body language.
[*] These are not the same skills that a neurotypical develops. These skills comes naturally to neurotypicals. They require much less mental energy, and are likely effortless to neurotypicals.
[*] I struggle with audio based learning. Working in large groups without the written word, or the ability to take notes is frustrating.
[*] I would have benefited from reading, writing, and note taking before I was 9-years-old. At age of 9 reading, writing, and note taking becomes the standard in school.
[*] When I was 6-years old I struggled with reading and learning. When I was 8-years old I was reading at the 6-year-old level. By the time I was 13-year-od I was reading at the 19-year-old level.
[*] Aside from my poor spelling skills, I did quite well academically. I never really studied anything. I did not understand the concept.
[*] I blended in, and my teachers were happy with me doing so.
[*] I blended in to protect myself out of fear of interacting socially.
[*] None of my teachers reported that they expected anything other than dyslexia, and/or ADD while I was younger. These are common components of Asperger's Syndrome.
[*] Dyslexia, and/or ADD was never mentioned in high school. I was told immediately (like the third day of high school) that I did not belong in special education.
[*] I showed up to high school and got a diploma. It was 100% effortless.
[*] Studying was something I did not know how to do.
[*] Math was a puzzle for me, as it required actual study. I was not bad at math, I just needed to put in effort. I did not realize this until I was in college.
[*] Naming concepts is difficult for me. The process seems to be useless in understanding concepts. Teaching them to others, and discussing them with others is when naming concept are useful. So mostly they are not useful to me.
[*] I was not ready for college. I did not understand myself. I did not understand my brain. I did not know how to study.

Rich, one thing really popped out for me in your detailed post here.
You said, “I struggle with audio based learning.”
I always struggled and still do with audio understanding/learning. I can hear songs and everyone is understanding lyrics and I just cannot understand it at all. Doesn’t matter what kind of music, I can’t process the content of the singer’s words. Not once in my whole life. Auditory info is processed by me by doodling/ drawing in pictures, and intensive note taking. Is trouble with auditory processing an Asperger trait?

 

[AO1501]

Is trouble with auditory processing an Asperger trait?

It is. Problems processing all sensory input is an Asperger trait. How much of a problem and in what way is dependent on the individual, but sensory input is amongst the most common, and most fundamental, of our issues.

 

[Thinx]

I was impressed with the clear way you described the situation and I don't know enough about what your school can normally do and provide to know if the things you listed that you want for your daughter are provided to children in her school? Are these provisions that the school has?

I would be careful to be as positive as you can be with the school as this is something I have slipped up with in interactions where I am stressed, and it's important not to alienate people who may be the ones who gatekeep resources you want. Smile. Be nice. Otherwise they may start to think you are an awkward or difficult parent and label you.

Why not make an appointment with school and talk with them about what they can provide, let them tell you what they have on offer for children with ASD level 1, and also bring that really clear list you have of what you want for your daughter and share these goals with school and ask how do these goals get met in school for children with ASD level 1 and how can I as a parent work with you to achieve these goals? You haven't mentioned a partner/other parent here so I am not sure of your situation but it would seem really important to discuss your ideas on this with them first and consult their views before taking any action.

 

[Rich Gray]

I have two children. My oldest does not have Asperger's Syndrome, but my youngest likely does. It seems to be genetic (sometimes), and tends to run on the father's side of the family (in general and in likely in this case). She has lots of the signs. My friend babysits them, and she has Asperger's Syndrome as well. She also thinks that my daughter has Asperger's Syndrome.

I fear that she will spend her time, like I did, trying to learn how to blend in and not get noticed. It is amazing that doing so equals no help. Being diagnosed at 38 was cathartic. I read up on how my brain works. I learned that I have a chameleon ability that uses unconscious energy. I learned how to turn the chameleon ability off (somewhat). I received counseling that helped me understand my brain. I am on ACD and OCD medication. I see a councilor who helps me learn more about my thought process.

I struggled getting and holding a job. I still struggle sometimes. After being diagnosed, I received counseling, and medicine for ADD and OCD. I got my insurance license, I was flown to the Bahamas', and given an award for performance.

• I then identified that the company's client was turning off call forwarding at 4:00 PM, we worked until 7:00 PM, and during annual enrollment we sometimes worked until 9:00 PM and sometimes until 11:00 PM. We have as many as 60-agents mostly sitting around when calls should have been coming in. . . for 3-4 years.
• I identified that the client was not telling us when an applicant sent in an application directly to the client (we did not know, and did not get paid) . . . for 3-4 years.
• I identified that some agents were slothfully of maliciously transferring non-sales calls on sales lines to other agents that ruined their batting average (they introduced automatic strike-outs) . . . for 3-4 years.
• I wrote a 7-8 page paper on how one metric was inefficient, and now they are revising the system.

I became an insurance agent on a whim (my wife asked me to apply, and I needed a job). I seem to have mastered it enough to be flown to the Bahamas, and be given an award within little more than one year. I made a 40% profit in my 401k last year. The ADD and OCD medications and counseling did not make me smarter, or give me super-powers, but it certainly feels as if they have.

The company I work for is doubling in size every year. My company has smart people, but they miss things. I can see things that these smart, doubling in size every year, people miss. I can notice things that are wrong with a greater frequency in a timeframe, than I would have before. I don't try to blend in nearly as much as I did before. I would have loved knowing how my brain works and having access to those medications in grade school, high school and college. I am more self-aware and can turn off the camouflage (sometimes), and know that it is actually there. It makes me sad that it took 38-years to learn this, and I would not wish the possibility upon another.

 

[Rich Gray]

Rich, one thing really popped out for me in your detailed post here.
You said, “I struggle with audio based learning.”
I always struggled and still do with audio understanding/learning. I can hear songs and everyone is understanding lyrics and I just cannot understand it at all. Doesn’t matter what kind of music, I can’t process the content of the singer’s words. Not once in my whole life. Auditory info is processed by me by doodling/ drawing in pictures, and intensive note taking. Is trouble with auditory processing an Asperger trait?

Yeah audio learning issues is a big one. I did horribly in 1st grade and 2nd grade (age 6 and age 7), as have my two children, where this is basically the only way that they teach during these grades. I caught up by 5th grade (age 10), my oldest caught up by 4th grade (age 9), and my youngest is now in 3rd grade (age 8).

I learn best reading, writing, breaking down the subject, and rebuilding it in a word processing program. I end up eventually being able to find weaknesses in the system, and increase productivity. I can sometimes/often see that there is a hole, or an unanswered question. People are REALLY bad at writing procedures. It would seem that people are also REALLY bad with efficiency.

 

[Rich Gray]

This was not easy to read in that format . . ..

I tend to do this a lot, in order to rearrange the order of the points, and then sometimes arrange them into paragraphs. I need to work on this. I tend to jump around a great deal in order while writing. I understand doing so is common for Asperger's Syndrome. I am not sure if I could have handled writing papers without a word processor, and if I did then it would have taken me forever.

 

[AO1501]

I tend to do this a lot, in order to rearrange the order of the points, and then sometimes arrange them into paragraphs. I need to work on this. I tend to jump around a great deal in order while writing. I understand doing so is common for Asperger's Syndrome. I am not sure if I could have handled writing papers without a word processor, and if I did then it would have taken me forever.

That makes sense, I can see the process works, and I would have to admit that it was perfectly logical in order!