Ds,14, refuses to accept Aspergers

[On*the*edge]

Hi everyone. I'm new here and feeling kinda awkward. My son, 14, refuses to accept Aspergers. He doesn't want to know about it. Refuses to talk about it. All he hears is SPECIAL as in IEP. RETARD when he here's autism. He is in the evaluation process now. Diagnosed around 9 or 10 as ADHD and mood disorder unspecified. No ADHD Meds have worked. He has many symptoms that are typical with Aspergers. Rigid thinking. Very literal and concrete. Doesn't understand most humor but this has improved with age. Poor social skills. Always dominated play time with his interests and how he wanted to enjoy them. Still does. Friends would quickly get bored and leave. He can be very pushy when seeking friends. Repeated attemps to get them to hang out, until they give in. And then you may not see them for weeks or months. None stay around for long. He will obsess on having friends, then suddenly turn off and not want to be around anyone. Conversations are typically one sided on current subject he is obsessed with such as Star Wars or mind craft and other video games. His obsessions change. He also obsesses on situations like going shopping with his grandmother and what toy should he pick so he won't irritate her by being indesicive and taking to long. (Weeks on that one) No speech symptoms other than very articulate at early age. About 2. And loud. Does not understand concept of inside voice. Especially when excited. Doesn't understand personal space. Can't seem to gauge others emotions. Tends to think they are kidding when they aren't or angry and insulting (teachers) when they haven't been. Immature social behavior. In middle school some kids even accused him of being gay. He has been bullyed for many years. He has been called gay and faggot so many times he is starting to obsess on the possibility that he is. In a nutshell, many obsessive thoughts. Very clumsy. Tried sports but decided, due to much teasing and abuse, that he just sucks at that kind of stuff. Obsessed over his inability to learn to ride a bike. He was 8 when he finally mastered it. Ahhh many, many, meltdowns over that. Did I mention meltdowns? He was born having a meltdown! These could be confusing to me. They weren't so much temper tantrums but overwhelmed with emotion that he could not do something perfect. Immediately! Reading for example. He just could not understand why he was unable to just open book and begin. Teacher would spend time alone with him when she taught reading because of the frequent meltdowns. Since adolescence, he has begun to show more anger. No violence. Very affectionate and loving but had to be taught about hurting others feelings. No tics, noises, or body movements. No unusual sensitively to sounds, textures or tastes. Anxiety and worrying since he was little. He just started with full blown panic atacks. Has missed many school days already. He is currently taking buspar and visteril when needed. Had problems with buttons and snaps. Still can't tie his shoes. Still weak on telling time. He is at a fifth grade level in math. Reads okay but has comprehension problems. Difficult for him to find needed information from written words when doing schoolwork. He has an odd way of reading out loud. It's like he doesn't understand inflection, tone and sentence structure, like commas or periods. He has 504 but I feel he needs more than that. I am currently pushing for this. He has a hard time dealing with any modifications. He doesn't want to be seen as different or " a retard" I have tried different approaches on explaining his differences but he is very stubborn. Even his therapist can't get him it listen. He is very frustrated and angry about "not being NORMAL". How can I get through to him. I have tried strengths and weaknesses. Not working. I've tried acceptance of who he is and compensating and adapting to succeed in life. ( he is convinced he will grow up to be something horrible or a complete failure) I am desperate for him to understand himself so he can grow with WHO he is, not fighting against it as if it will just go away. Is it to late? Has the damage to his self esteem from peers and teachers gone to deep? I have been seeking help for him for many years. Some of that has done more damage then good. At times he is convinced he will end up in a mental hospital for the rest of his life. I'm afraid I will. Has any of you been through this as a parent or an aspie? Any advice would be welcomed with open arms and heart!

Wendy On*The*Edge

 

[Kari Suttle]

He's fourteen and in middle school, right? That was a rough time for me as well. It was only when i got to middle school that i really started to figure out that i was different from everyone else. Teased and bullied in elementary school but at least then i had friends. In middle school, i was almost instantly left behind. I don't know your kid but i would guess that at an age where all you really want is to fit in and have friends, having difficultly with that to begin with and then being told you'll always have difficulty with it is a hard pill to swallow. I remember i spent most of middle school trailing groups of kids i would have wanted to be friends with, never hanging out with them outside of school cause i was too timid for that. But just trailing them at school. I only gave up attempting to have friends when i got to highschool.

When my mom first suggested i was an aspie i balked at the idea myself. I've only ever heard of autism in context with the lower functioning autistics, the ones that can't talk and need lifelong assistance. It was only when i researched it for myself on my own and came on here comparing my life with the lives of other aspies that i began to accept it. Honestly he's probably just going to need to process it on his own in his own time. At least it sounds like he has a great mom behind him, since you're willing to go through so much to help him.

Random piece of advice but i would split your post into paragraphs, by topic preferably. Its kind of hard to read.

 

[DogwoodTree]

Is there a group of some kind that would cater to one of his interests so he can make friends who have more in common with him? When I was that age, I was fascinated with airplanes and helicopters, and one of the local airports had a little class or something for kids who wanted to grow up to be a pilot.

A biking club, maybe? Those are pretty common now, and they often have a "no-drop" group, meaning they won't leave someone behind if that person needs to go more slowly. Plus, that would get him around adults, who will handle his differences much more maturely than kids do. Learning how to carry on a conversation with adults who share a mutual interest could go a very long way to boosting his self-esteem.

My heart goes out to you. I have a friend in a similar situation with a child she and her husband adopted. The girl is 15 but has several emotional and personality issues from malnutrition and mistreatment before she was adopted. It's very difficult for this family, like you described, because this girl is becoming so keenly aware of her differences and inability to fit in. She so badly just wants to be accepted and "normal". It's been tough for everyone involved.

 

[On*the*edge]

He's fourteen and in middle school, right? That was a rough time for me as well. It was only when i got to middle school that i really started to figure out that i was different from everyone else. Teased and bullied in elementary school but at least then i had friends. In middle school, i was almost instantly left behind. I don't know your kid but i would guess that at an age where all you really want is to fit in and have friends, having difficultly with that to begin with and then being told you'll always have difficulty with it is a hard pill to swallow. I remember i spent most of middle school trailing groups of kids i would have wanted to be friends with, never hanging out with them outside of school cause i was too timid for that. But just trailing them at school. I only gave up attempting to have friends when i got to highschool.

When my mom first suggested i was an aspie i balked at the idea myself. I've only ever heard of autism in context with the lower functioning autistics, the ones that can't talk and need lifelong assistance. It was only when i researched it for myself on my own and came on here comparing my life with the lives of other aspies that i began to accept it. Honestly he's probably just going to need to process it on his own in his own time. At least it sounds like he has a great mom behind him, since you're willing to go through so much to help him.

Random piece of advice but i would split your post into paragraphs, by topic preferably. Its kind of hard to read.

Sorry it so hard to read. I was exhausted and it shows in my thought process here. Will mentally file advice for future reference! Thanks for sharing too. I could see him doing the trailing of wanted friends. I just wish he wasn't so stubborn. Insight can bring some peace of mind. I want that for him so much.

 

[On*the*edge]

Is there a group of some kind that would cater to one of his interests so he can make friends who have more in common with him? When I was that age, I was fascinated with airplanes and helicopters, and one of the local airports had a little class or something for kids who wanted to grow up to be a pilot.

A biking club, maybe? Those are pretty common now, and they often have a "no-drop" group, meaning they won't leave someone behind if that person needs to go more slowly. Plus, that would get him around adults, who will handle his differences much more maturely than kids do. Learning how to carry on a conversation with adults who share a mutual interest could go a very long way to boosting his self-esteem.

My heart goes out to you. I have a friend in a similar situation with a child she and her husband adopted. The girl is 15 but has several emotional and personality issues from malnutrition and mistreatment before she was adopted. It's very difficult for this family, like you described, because this girl is becoming so keenly aware of her differences and inability to fit in. She so badly just wants to be accepted and "normal". It's been tough for everyone involved.

My son is overweight and very self conscious about it. I have tried church youth group. Offered lego group and mind craft group. His response is "No way, there are kids there from school" he is picked on a lot about his weight or " I'm really scared of meeting new people, what if they don't like me?" He is definitely very rigid in his thoughts. Once he sets his mind on a possible outcome he will not budge. I have been able to get him involved with things that I am doing at church. Like our shoebox ministry. But he will not go to church with me because of certain kids that also attend. We also enjoyed local historical society fund raiser and made Christmas wreaths together. We are limited financially, so this type of activities are not often. If he suspects other kids will be there he will not go. Sigh.... When he was little, he would go anywhere there were kids, with great excitement...

 

[On*the*edge]

He's fourteen and in middle school, right? That was a rough time for me as well. It was only when i got to middle school that i really started to figure out that i was different from everyone else. Teased and bullied in elementary school but at least then i had friends. In middle school, i was almost instantly left behind. I don't know your kid but i would guess that at an age where all you really want is to fit in and have friends, having difficultly with that to begin with and then being told you'll always have difficulty with it is a hard pill to swallow. I remember i spent most of middle school trailing groups of kids i would have wanted to be friends with, never hanging out with them outside of school cause i was too timid for that. But just trailing them at school. I only gave up attempting to have friends when i got to highschool.

When my mom first suggested i was an aspie i balked at the idea myself. I've only ever heard of autism in context with the lower functioning autistics, the ones that can't talk and need lifelong assistance. It was only when i researched it for myself on my own and came on here comparing my life with the lives of other aspies that i began to accept it. Honestly he's probably just going to need to process it on his own in his own time. At least it sounds like he has a great mom behind him, since you're willing to go through so much to help him.

Random piece of advice but i would split your post into paragraphs, by topic preferably. Its kind of hard to read.

This is his freshman year in high school. Junior Air force ROTC. Just had a thought, I could contact his instructor to ask about outside of school activities or groups geared around ROTC. He loves everything about the military!

 

[ASD_Geek]

How about the local historical society or civil war re-enactors? If he'd like to participate in battles, etc. there are also groups like the Society for Creative Anachronism and Dagorhir.

 

[On*the*edge]

I don't know what the last two are, but I will definitely research! Sounds interesting. Yay, I like the idea of mock battles. I have heard about some in our area. Great idea! I will reach out to him with that. Thanks!

Meant to reply to your post ASD_Geek. Whoops...

 

[On*the*edge]

Is there a group of some kind that would cater to one of his interests so he can make friends who have more in common with him? When I was that age, I was fascinated with airplanes and helicopters, and one of the local airports had a little class or something for kids who wanted to grow up to be a pilot.

A biking club, maybe? Those are pretty common now, and they often have a "no-drop" group, meaning they won't leave someone behind if that person needs to go more slowly. Plus, that would get him around adults, who will handle his differences much more maturely than kids do. Learning how to carry on a conversation with adults who share a mutual interest could go a very long way to boosting his self-esteem.

My heart goes out to you. I have a friend in a similar situation with a child she and her husband adopted. The girl is 15 but has several emotional and personality issues from malnutrition and mistreatment before she was adopted. It's very difficult for this family, like you described, because this girl is becoming so keenly aware of her differences and inability to fit in. She so badly just wants to be accepted and "normal". It's been tough for everyone involved.

I love your blog...much food for thought on my life.

 

[DogwoodTree]

My son is overweight and very self conscious about it. I have tried church youth group. Offered lego group and mind craft group. His response is "No way, there are kids there from school" he is picked on a lot about his weight or " I'm really scared of meeting new people, what if they don't like me?" He is definitely very rigid in his thoughts. Once he sets his mind on a possible outcome he will not budge. I have been able to get him involved with things that I am doing at church. Like our shoebox ministry. But he will not go to church with me because of certain kids that also attend. We also enjoyed local historical society fund raiser and made Christmas wreaths together. We are limited financially, so this type of activities are not often. If he suspects other kids will be there he will not go. Sigh.... When he was little, he would go anywhere there were kids, with great excitement...

I have a friend whose son is overweight and not good with other kids for various reasons. The dad started bike riding with him to help him lose some weight, and started him in some kind of karate or whatever lessons. Losing a little weight, having time with his dad, and learning assertiveness skills in his class, all helped.

If your son is nervous about being around other kids from his school, can you look for these kinds of classes in a nearby town? My parents were divorced, so when I went to church with my dad, there was none of the stigma of my being such a nerd with that youth group because they didn't know me at school. Actually, with that church being in a larger city, I actually found other people who valued many of the same things I did. It didn't solve all my problems, but it helped.

 

[DogwoodTree]

I love your blog...much food for thought on my life.

Glad you enjoyed it...I need to post some more, just got busy.

 

[Ian114]

I like the idea of going to a nearby town so that kids won't know him.

Middle school was very, very hard for me. I know you probably don't want to hear this, but I stopped going and got my GED at 15 and started community college at 16. Adults, like at the college, are much more accepting than high school kids.

 

[ASD_Geek]

I don't know what the last two are, but I will definitely research! Sounds interesting. Yay, I like the idea of mock battles. I have heard about some in our area. Great idea! I will reach out to him with that. Thanks!

The links for the groups are: Dagorhir.com - Welcome to Dagorhir Battle Games and http://www.sca.org/geography/findsca.html
There is generally a great mix of accepting people in these groups.
Middle school is a VERY rough time for Aspies. I hope that these help.

 

[Spinning Compass]

I don't blame him for not wanting to accept his diagnosis. He's right, in a way. When you say, all he hears is SPECIAL ED and RETARD when he hears autism, keep in mind that this is still very much how a lot of people view autism. There is a very real stigma connected to his condition at his age. You need to face that with him and not deny it.

It took me literally decades for me to own up to the "A" word and even now there are situations where I will not use it because of what I went through in school, and also, when I hear people talk around me. When I hear the words "retard" or "sped" or jokes about riding the short bus, I know that it is not safe for me to come out of the autism closet.

People can be incredibly cruel to those who appear physically mature but behave as if they were much younger. I totally get his frustration about being different and not being singled out but the facts are that the behaviors that you describe do make him a target. These mean kids are trying to tell him the same things you are, only they are not so nice about it. Think of them as enforcers of society's rules. If he is being teased for behavior issues, it is because they expect him to change his behavior, If he won't, well . . . ultimately it does have to come from him. I wish I could say otherwise. But we have a very long way to go before general society accepts that not everyone is on the same timetable.

You must remember that 50 or 60 years ago, there was even less social tolerance for children who did not fit the norm and many were institutionalized. There was (and still is) a very real sense that social acceptance is earned, it is not automatic. This is what your son is up against. This is what you need to work with in order to motivate him. Don't try to tell him (as my parents did) that those names don't mean anything or that everyone is "retarded" in some way or that everyone is different; it's not true and he knows it. This is reality. These names do mean something and that is why they are used. He is getting a harsh lesson in social place. Does he want to stay in that social place? Sometimes you have to say, "look, you won't be accepted if you do X." Because the kids that are teasing him aren't sophisticated about autism and frankly they don't care. They only know that he is doing things they consider unacceptable and that is all that matters. You need to focus on the behavior, not the label.

 

[Suiseiseki]

The whole "there's no such thing as normal" crap is a lie too, there is, and we're not it.

 

[Spinning Compass]

Yeah, I got that one too. I never understood it. If there is no such thing as normal, then why go through all the trouble to change someone to make them normal?

I tend to be a pragmatic person. I know my church (Unitarian-Universalism) dreams of a utopia in which differences don't matter and everyone can just be who they are, but that is a big lie too, and it isn't going to happen. When I hear talk like that, I am reminded of the statement in Orwell's "Animal Farm": "All animals are equal but some are more equal than others." There ARE differences that matter and to pretend they don't--to tell others who are experiencing discrimination based on these differences, to pretend they don't--is dishonest. It's the lazy way out. It absolves society from having to face up to its role in creating and perpetuating such situations and it tells the victim, you really don't have anything to complain about.

I believe that we must work to change society's attitudes but in the meantime if there are things that make you a target and you can change those things, then you are just asking for trouble if you don't. I know that's not a popular message, but we need to be realistic.

 

[dee]

A lot of this sounds like myself. I have only just been diagnosed so am still in the process of getting help for myself.
But, I was severely bullied in my first couple of years at high school to the point where there was police involvement. I stayed at that school the following year with few friendships and absolutely hated being there. Towards the end of year 9, mum offered for me to move to a different school which had a really good name, and I'm so grateful to her for giving me that opportunity. I started there at the start of year 10 and it was the best thing she could of done for me at the time. I never had any huge issues there because I felt like I was in a supportive environment.

 

[On*the*edge]

I don't blame him for not wanting to accept his diagnosis. He's right, in a way. When you say, all he hears is SPECIAL ED and RETARD when he hears autism, keep in mind that this is still very much how a lot of people view autism. There is a very real stigma connected to his condition at his age. You need to face that with him and not deny it.

It took me literally decades for me to own up to the "A" word and even now there are situations where I will not use it because of what I went through in school, and also, when I hear people talk around me. When I hear the words "retard" or "sped" or jokes about riding the short bus, I know that it is not safe for me to come out of the autism closet.

People can be incredibly cruel to those who appear physically mature but behave as if they were much younger. I totally get his frustration about being different and not being singled out but the facts are that the behaviors that you describe do make him a target. These mean kids are trying to tell him the same things you are, only they are not so nice about it. Think of them as enforcers of society's rules. If he is being teased for behavior issues, it is because they expect him to change his behavior, If he won't, well . . . ultimately it does have to come from him. I wish I could say otherwise. But we have a very long way to go before general society accepts that not everyone is on the same timetable.

You must remember that 50 or 60 years ago, there was even less social tolerance for children who did not fit the norm and many were institutionalized. There was (and still is) a very real sense that social acceptance is earned, it is not automatic. This is what your son is up against. This is what you need to work with in order to motivate him. Don't try to tell him (as my parents did) that those names don't mean anything or that everyone is "retarded" in some way or that everyone is different; it's not true and he knows it. This is reality. These names do mean something and that is why they are used. He is getting a harsh lesson in social place. Does he want to stay in that social place? Sometimes you have to say, "look, you won't be accepted if you do X." Because the kids that are teasing him aren't sophisticated about autism and frankly they don't care. They only know that he is doing things they consider unacceptable and that is all that matters. You need to focus on the behavior, not the label.

Thanks for being very honest with me. I had never thought of it this way. (Think of them as enforcers of society's rules. If he is being teased for behavior issues, it is because they expect him to change his behavior) It makes sense. But, what if he does not have the insight to recognize his behavior, the maturity? In a lot of ways he does not act his age. I think this is where I need to make adjustments to how I relate to him. His father and I both have the mind set of "your almost 15, act like it." I know he may benefit from more intense therapy. He has been undiagnosed for so long that he has learned very negative ways coping. Did you have therapy as a child? Did you think it was helpful? At times I feel it only makes some issues worse for him.
Fantastic post. I have much to think about.

 

[On*the*edge]

A lot of this sounds like myself. I have only just been diagnosed so am still in the process of getting help for myself.
But, I was severely bullied in my first couple of years at high school to the point where there was police involvement. I stayed at that school the following year with few friendships and absolutely hated being there. Towards the end of year 9, mum offered for me to move to a different school which had a really good name, and I'm so grateful to her for giving me that opportunity. I started there at the start of year 10 and it was the best thing she could of done for me at the time. I never had any huge issues there because I felt like I was in a supportive environment.

I'm so sorry for what you went through! What type of school did you transfer to. Was it smaller? I have wished I could send my son to a Christian school (unaffordable) or home school him ( to emotionally fragile myself) I also can't get away from the thought that he would not be prepared enough for the reality of how harsh the world is. I'm so happy the change in schools worked out for you.

 

[On*the*edge]

I agree. Unfortunately we do have to conform or except the reality of who we are and say "up yours" I have tried so hard all my life to believe in that "Big Lie" that differences don't matter. I was one of the kids that in high school who tried to protect those that were different, because I was. My sisters are the worst at excepting this. Just agree to disagree! Except each other for who we are! No, someone has to try to control because they do not see you conforming. Changing society sounds like such an overwhelming concept. How is it even possible? I wish I could just get those around me, my family, my husbands family, ( who by the way, think that there is NOTHING wrong with that boy, he just needs a mother) to except and love each other, yes, even if you don't particularly like them! That would be profound enough for me. We will have utopia some day. God has promised us this.

Yeah, I got that one too. I never understood it. If there is no such thing as normal, then why go through all the trouble to change someone to make them normal?

I tend to be a pragmatic person. I know my church (Unitarian-Universalism) dreams of a utopia in which differences don't matter and everyone can just be who they are, but that is a big lie too, and it isn't going to happen. When I hear talk like that, I am reminded of the statement in Orwell's "Animal Farm": "All animals are equal but some are more equal than others." There ARE differences that matter and to pretend they don't--to tell others who are experiencing discrimination based on these differences, to pretend they don't--is dishonest. It's the lazy way out. It absolves society from having to face up to its role in creating and perpetuating such situations and it tells the victim, you really don't have anything to complain about.

I believe that we must work to change society's attitudes but in the meantime if there are things that make you a target and you can change those things, then you are just asking for trouble if you don't. I know that's not a popular message, but we need to be realistic.