Frustrated parent

[KatieM]

I have a 14yo son who would've been diagnosed with Asperger's if it weren't for DSM V. I was 1 year too late for that. He has always had Asperger-type quirks, but I was never able to get a diagnosis. Now that it's under the ASD umbrella, he definitely will not get a diagnosis - he does not have repetitive movement (anymore). But he does have OCD, which started in the last few years. He's pretty smart, and he's found ways to work around some of his OCDs.

He still struggles socially, and he says it doesn't bother him, but I know it will help him in the future. He also struggles with certain English assignments, i.e. assessing character personality, writing an essay about himself, etc. It can get bad to the point that he comes home with a zero. I've had to email teachers explaining his "condition," which I have to write a book about because I can't call it Asperger's.

We're seeking private counseling, but he's not sure if he wants to do it. This counselor met with him yesterday and said she does not see ASD in him, so I don't know if I should spend the money to see a specialist (psychologist, dev ped, etc).

Instead of Asperger's, it's now Social Communication Disorder? Do schools recognize this and provide assistance? Have teachers caught on to this? We're in the US, BTW.

Just a bit frustrated and lost as to what to do next. Seek SCD diagnosis? Will that even make any difference? Does he have to see at least a psychologist for that? Or forget any labels they can put on him and just do private counseling?

Thanks!
Katie

 

[Judge]

Perhaps it's best to focus on the most pressing issue in this equation. That without a formal medical diagnosis, don't expect an educator to formally acknowledge such concerns based only on the observations of a parent.

As to what condition your son may or may not have, that ultimately depends on the diagnosis. Best to pursue such a thing through a psychiatrist or neurologist who specializes in forms of autism and all the possible comorbid conditions that may or may not be present.

Though also bearing in mind that a positive diagnosis is not something to be guaranteed simply through direct examination by a medical professional.

 

[Ginseng]

counselor met with him yesterday and said she does not see ASD in him

The counselor does not know anything about autism! This makes me so angry. It isn't really her fault. They do not teach this in the schools. This makes everyone suffer. The counselors damage the clients and the clients are just damaged from not being understood by professionals. To diagnose they would have to look at childhood behavior. They cannot look at someone and say "I do not see autism." As humans we all try to fit in. We are capable of learning. But our thinking processes will still be the same. We can learn that in certain situations when we see A we do B or it means B but that does not mean in a new situation that we can see A and have any idea where to go from there. We are lost without the rule book. If you take him to a therapist only take him to one who specialized in autism. Do not take him to see a psychiatrist or therapist who does not specialist in autism. If he doesn't need therapy now he will after they get through with him. It really is that bad out there.

 

[onlything]

I'm surprised that the counselor decided it's not ASD on the basis of one meeting(which, knowing how it works, lasted what, 50 minutes? an hour?). Children can mask quite well, especially if it's any form of 'HFA' or Aspergers. Also, normally any tests for ASD can take a few hours and/or insight of a parent/teacher etc. I would say, if you want to be sure, go to a specialist, not to just any counselor.

At the moment, since your boy has no formal diagnosis, he will probably not receive any help or understanding from his teachers whatsoever.

Also, please don't press on the kid too much about his potential diagnosis. Speak to him and make sure that counseling etc. are really things he wants. If there are too many things happening he may get hurt or start thinking that it's a disease needing cure or that his being on the spectrum is the only thing that determines or sums up who he is.

 

[MeghanWithAnH]

Now that it's under the ASD umbrella, he definitely will not get a diagnosis - he does not have repetitive movement (anymore). But he does have OCD, which started in the last few years. He's pretty smart, and he's found ways to work around some of his OCDs.

As an autistic who would have been diagnosed with aspergers if I'd known how to seek a diagnosis a few years earlier, as well as a graduate student in speech-language pathology who is working on specializing in autism, a lot of these problems sound very familiar to me. I was also worried that I could never get diagnosed under the DSM 5 because I had become very good at masking and no longer showed obvious restrictive/repetitive behaviors. You say he doesn't have repetitive movement anymore, which implies that he did when he was younger. His characteristics when he was younger should be part of a diagnosis. The phrase "currently or by history" is your friend there. It was designed to acknowledge that teenagers and adults with ASD don't always clearly show their characteristics, especially if they have average or above average intelligence. I also wonder about this OCD you are describing. I'm not an expert on OCD, but I know there is a lot of overlap between ASD restrictive/repetitive behavior and OCD characteristics. It's possible that as he learned to adapt to the world his original repetitive movements have shifted to look more like OCD characteristics. A professional who didn't know much about ASD could easily mistake one for the other. Professionals who don't know much about ASD or only work with people with severe impairments also tend to miss anything short of constant hand flapping and a refusal to meet anyone's eyes. They also tend to miss less obvious social effects or assume that just because the client can talk one-on-one to an adult who is fully guiding the conversation, they must not have any social problems at all.

This counselor met with him yesterday and said she does not see ASD in him, so I don't know if I should spend the money to see a specialist (psychologist, dev ped, etc).

We get kids at our university clinic with the most obvious cases of ASD in the world, whose parents have been trying for years to find someone who knows what's going on, and who have been repeatedly told that the child did not have ASD. Professionals think they are being helpful and reassuring when they do that, but they are only showing their own ignorance and delaying helpful services. Personally, I've been "reassured" that I make good eye contact after spending the whole conversation staring at a magnet over the person's shoulder, so I never had much faith in that kind of observation even before I learned how the actual diagnostic process is supposed to work.

Another possibility, as you mentioned, is Social Communication Disorder. It has the same social criteria but without the restrictive/repetitive behaviors. The diagnosis process is supposed to be to first look for ASD and then if they don't meet the criteria for ASD next check the criteria for SCD. Unfortunately, many professionals don't know much about SCD yet so some don't even think to look for it. It is an official diagnosis like ASD so it would be easier to get services or accommodations, but it might take some more explaining because teachers and school administrators also don't know much about it yet. Speech language pathologists (speech therapists) can actually diagnose SCD and are the best ones to evaluate it, although some in our profession don't realize that either.

Whether being evaluated for ASD or SCD, it helps to come prepared with your own background information. Here's how I got a psychologist to take me seriously as a 29 year old woman who had wanted a diagnosis since I was 16. Before I ever talked to the psychologist, I studied the DSM 5 criteria and found multiple examples that fit each criteria from my own life. I included current examples and examples from when I was younger. I organized them to show how they fit the criteria and wrote them all down. It took some examination because many of the things had just become normal parts of my life or things I just explained away. There were things that I never would have realized were ASD-related without reading about other people's experiences online. I tend to downplay my differences, but you have to cut off that tendency to get a diagnosis. It's still no guarantee because there are a lot of professionals who are stuck on one stereotypic view of what ASD can look like, but if you've done your research it puts you in a better position to be the one who changes their mind. Or you might manage to find one of the ones who actually knows what they are doing. Even with them, it's helpful to be prepared with your own information.

 

[Ginseng]

If your son is in school in the United States, as a parent you have the right to request testing for him. This is at no charge to you. The school will pay for it. They have funds set aside for that from the government, not the schools. Though they will use it on their sports teams first chance they get. Be sure to assist that he be tested by a facility that truly understands autism. The school counselor obviously cannot do proper autism testing. She has already shown she can't "see it."

 

[Gracey]

If he’s stated it doesn’t bother him, I’d be inclined to leave it alone for now.

Be ready to help when it is bothering him.

 

[KatieM]

Thank you all for your responses! They're all very helpful!

OMG, how did I not think that his current school can do an assessment! He was assessed by his public school when he was 10, and that's when the psychologist said he didn't have ASD, so no IEP. But we (parents) and his teacher filled out the GADS survey, and he scored over 90%. He had been adjusting so well that we didn't think any other intervention was necessary.

He also had sensory processing disorder when he was much younger and received occupational therapy. I still have all the paperwork, so I will definitely give them a copy.

The counselor he met yesterday is actually a licensed master social worker. We had asked her who we should go to for ASD assessment, and we just wanted to know what she thought of him. She did say he would be her oldest client, so she probably doesn't have much experience with teens.

I was very much like my son, worse, actually. Looking back, I would've definitely been diagnosed with ASD. As with many females, I learned how to become socially-acceptable. My son is not quite there yet. I know the struggle, but at least he doesn't feel the need to fit in. He does have a few friends but never wants to invite them over. He's really smart, so he can't really relate to his peers. And he's an only child.

We have a lot of thinking to do. I definitely don't want to push him into doing something he doesn't want to.

Thank you!!

 

[Peter Morrison]

Hi KatieM, your son's symptoms mimic my own from childhood. I won't comment on everything you are looking for regarding legalities, teachers' consciousness, or his being OK with social anxiety, but I will advise you on how to help him with his English assignments. If it suits him, start keeping an English composition reference book that he creates for his own use. Go slow at first, then build on what he acquires over time.

I don't think that people with ASD fully assess or even concern themselves with the qualities of a person in the way an English essay requires. This may be because we don't have that kind of assessment of people in our radar. We accept face value and exact words in our interpretation. Digging deeper requires training, and the training is not anything magical. It is just a methodical approach to story assessment and character analysis. This is a classic case of not seeing the forest because the trees are in the way.

Most people, and adults in general, can form an opinion of a character from their actions within a context. You should start reading with him so that you can discuss the characters and the story. Discussion helps memory and helps form opinions, yours and his. The words in the story have a direct relationship to the character by describing the person and explaining his/her actions. You should take it further by using imagination, and interject your own views for your son to agree with or disagree with.

The objective of working with him is to open up his sense of resources within himself that can help him for a strong opinion of a character or situation. When you read about a character, and you have enough information to form an opinion, ask simple questions and complicated ones as well. Referencing the character you might ask: Where is he/she? Why is he there? Where was he before this? How do you know? Did he talk to anyone along the way? Where does he live? Who lives with him? Is he happy or sad? Is he trying to accomplish anything? What do you think he is wearing? What is the weather like? Does he know this place well? How does he know this place? Is he looking for anyone? Do you think he will be successful? Why? etc.

The words in the story can be just words that a student reads. Reading difficulties can make interpretation of a story difficult. For an essay, or story, the student has to use the facts stated in the story, as well as inferred information that comes with exploration of possibilities. In order to form a picture, to make this character more human, one must explore beyond the words in the story.

Consider phrases such as: It was a sunny day in Mayfield when Tom decided to go to the corner store. From the sentence alone, you can infer a lot of information that helps create the persona of Tom. Why is it called a corner store? Has he been there before? Was he wearing a jacket? What do you think he wanted to buy? Did he go alone? Why does anyone go to the corner store? Where is Mayfield?

As one who rejected reading as a child, and never performed well on tests, I believe that the role of ASD simply means that the student needs to be aware of forming an image of a story to help with memory and fill in the background to the events. A child doesn't do this on their own. They have to learn how to build the images from facts and simple imagination.

I remember being given a brochure about "good study habits". Let's all laugh now. A kid with reading problems being handed a brochure - it's like kicking him in the face. It represents double failure.

If an ASD kid is successful at something, they are likely to take well to the activity. Failure in reading is a big turn-off, and he'll continuously reject reading for that reason. The young person needs to develop the skills that lead to improved success in their school work. I would also caution you on methods that may or may not produce instant results. It's like knowing that a child wants to eat a certain food, but you don't know what that is. Your only choice is to try different foods until you find the right one.

This advice comes from my own experiences dealing with reading and writing assignments as a youth. Eventually, I found a balance between reading, answering questions, doing the assignments asked, and knowing how to use a dictionary when I didn't understand vocabulary. I believe that ASD kids need to be aware of methods to help them get through the stages of learning. Kids don't know to ask if they don't understand the text. They don't want to look silly or encourage ridicule.

If possible, make your interaction with your son on school matters a daily conversation. Read for him, with him, and have him read to you. You are building confidence through applied skill ability. He'll also feel better at school having done his homework well. He'll be ready for anything and his enthusiasm will increase.

I'm very glad that you are seeking help for your son. I suffered for many years experiencing failure and frustration because I didn't know there were methods used in reading comprehension or writing. Others seemed to read and grasp everything instantly. When I wrote, my sentences were childish and without descriptive vocabulary. Like your son, I have had a "zero" given to me many times. I hated bringing those home. I wish I had had someone helping me regularly overcome my deficiencies. For both parent and child, the effort is worthwhile. I think it counts as quality time. I wish you a lot of luck. Enjoy all the stories you and your son can explore together.

 

[MeghanWithAnH]

Hi KatieM, your son's symptoms mimic my own from childhood. I won't comment on everything you are looking for regarding legalities, teachers' consciousness, or his being OK with social anxiety, but I will advise you on how to help him with his English assignments. If it suits him, start keeping an English composition reference book that he creates for his own use. Go slow at first, then build on what he acquires over time.

I don't think that people with ASD fully assess or even concern themselves with the qualities of a person in the way an English essay requires. This may be because we don't have that kind of assessment of people in our radar. We accept face value and exact words in our interpretation. Digging deeper requires training, and the training is not anything magical. It is just a methodical approach to story assessment and character analysis. This is a classic case of not seeing the forest because the trees are in the way.

Most people, and adults in general, can form an opinion of a character from their actions within a context. You should start reading with him so that you can discuss the characters and the story. Discussion helps memory and helps form opinions, yours and his. The words in the story have a direct relationship to the character by describing the person and explaining his/her actions. You should take it further by using imagination, and interject your own views for your son to agree with or disagree with.

The objective of working with him is to open up his sense of resources within himself that can help him for a strong opinion of a character or situation. When you read about a character, and you have enough information to form an opinion, ask simple questions and complicated ones as well. Referencing the character you might ask: Where is he/she? Why is he there? Where was he before this? How do you know? Did he talk to anyone along the way? Where does he live? Who lives with him? Is he happy or sad? Is he trying to accomplish anything? What do you think he is wearing? What is the weather like? Does he know this place well? How does he know this place? Is he looking for anyone? Do you think he will be successful? Why? etc.

The words in the story can be just words that a student reads. Reading difficulties can make interpretation of a story difficult. For an essay, or story, the student has to use the facts stated in the story, as well as inferred information that comes with exploration of possibilities. In order to form a picture, to make this character more human, one must explore beyond the words in the story.

Consider phrases such as: It was a sunny day in Mayfield when Tom decided to go to the corner store. From the sentence alone, you can infer a lot of information that helps create the persona of Tom. Why is it called a corner store? Has he been there before? Was he wearing a jacket? What do you think he wanted to buy? Did he go alone? Why does anyone go to the corner store? Where is Mayfield?

As one who rejected reading as a child, and never performed well on tests, I believe that the role of ASD simply means that the student needs to be aware of forming an image of a story to help with memory and fill in the background to the events. A child doesn't do this on their own. They have to learn how to build the images from facts and simple imagination.

I remember being given a brochure about "good study habits". Let's all laugh now. A kid with reading problems being handed a brochure - it's like kicking him in the face. It represents double failure.

If an ASD kid is successful at something, they are likely to take well to the activity. Failure in reading is a big turn-off, and he'll continuously reject reading for that reason. The young person needs to develop the skills that lead to improved success in their school work. I would also caution you on methods that may or may not produce instant results. It's like knowing that a child wants to eat a certain food, but you don't know what that is. Your only choice is to try different foods until you find the right one.

This advice comes from my own experiences dealing with reading and writing assignments as a youth. Eventually, I found a balance between reading, answering questions, doing the assignments asked, and knowing how to use a dictionary when I didn't understand vocabulary. I believe that ASD kids need to be aware of methods to help them get through the stages of learning. Kids don't know to ask if they don't understand the text. They don't want to look silly or encourage ridicule.

If possible, make your interaction with your son on school matters a daily conversation. Read for him, with him, and have him read to you. You are building confidence through applied skill ability. He'll also feel better at school having done his homework well. He'll be ready for anything and his enthusiasm will increase.

I'm very glad that you are seeking help for your son. I suffered for many years experiencing failure and frustration because I didn't know there were methods used in reading comprehension or writing. Others seemed to read and grasp everything instantly. When I wrote, my sentences were childish and without descriptive vocabulary. Like your son, I have had a "zero" given to me many times. I hated bringing those home. I wish I had had someone helping me regularly overcome my deficiencies. For both parent and child, the effort is worthwhile. I think it counts as quality time. I wish you a lot of luck. Enjoy all the stories you and your son can explore together.

What you are describing sounds incredibly similar to what my professors would say to do with a teenager with the challenges that you and @KatieM describe. It sounded like a chapter from one of my textbooks! That's just the kind of things a good speech language pathologist would do with a teenager with pragmatic language problems. Unfortunately, there's a myth that once people are able to speak reasonably well and understand the basic mechanics of reading and writing they shouldn't need help with that kind of thing anymore, so a lot of people grow up without skills that they could have learned with a little help.

You officially know more about adolescent language and literacy development than many practicing professionals. I don't know whether to cheer you on or despair over the general state of education

 

[KatieM]

Peter, thank you so much for taking your time to write your reply. This is so helpful. I'm going to save this and read it over and over. I often struggle with the same thing, so helping him with homework usually means I use my superior Googling skills. I used Cliff Notes in my days. I am so glad I joined this group. Thank you again!

 

[Tom]

It can be a tricky thing. I'm undiagnosed Aspie/On the Spectrum and we are quite sure my son is also but never discussed it with him. In my case I knew i was 'different' from the start and was frequently called that by others, but back then HFA was not commonly known. By the time we (me and my wife, now a special ed teacher) figured it out I was in my 30's and in a military career and diagnosis was not something I wanted as it could have caused a medical discharge. We only figured it out once my young nephews, and my wife's younger brother got diagnosed with Aspergers and then learned more about it. It definately runs in families.

It certainly has effects on my sons life but essentially minor (so far) as he has persued his own career in the military and does oodles of things on his own (like is a volunteer fireman, an EMT, does college in his 'spare' time). So I have seen it as a 'why fix it, if it ain't broke' sort of situation. I would however persue it with him if I thought problems were developing that knowledge of the condition, or even perhaps therapy, might help.

In your case if you choose to persue it, a second opinion or even a third is a good idea. I find many professionals only recognized textbook cases and miss the many others with HFA. There is a whole lot of variation with it (hence the 'spectrum' umbrella term).

If your son has it, its not unlikely that you and/or you're husband do as well.