My son refuses to accept he has AS - need your advice
11 Mar 2010, 10:23 am
Thank you for letting me post here.
I desperately need input from people who have Asperger's Syndrome. My son is a terribly bright, funny and engaging 13 year-old who was dx'd with AS when he was 4 1/2. In my house, the word "autism" has never been spoken in whispers. I hate ABA, don't care what "causes" autism and take issue with anyone who suggests my son needs to be "cured" of anything. Asperger's doesn't need a cure; I'm not sure I'd say the same about neurotypicality. He knows I see AS as nothing short of a gift and people with Asperger's as essential components in moving our society forward. I don't want my child to be neurotypical, like me. Why would I? He's far more interesting and has more potential than most people I know.
Allow me give you a brief backgound. My son attends a regular middle school with virtually no autistic resource after spending preschool and K-5 in schools with autistic support. He likes school but they don't have a clue about the AS mind or what to do with him. Despite having a 1:1 aide, he's had six lunch detentions, three after-school detentions, two in-school suspensions and one three-day at home suspension - just this year. Today, he's in internal suspension for defacing school property; yesterday he put toilet paper all over the 6th and 7th grade boys' bathrooms after the school nurse said he was well enough to go back to class. All of his disciplinary problems at school have been the direct result of impulsive anger and a smart mouth. He made "terroristic threats" when he told another boy during an argument that he was going to kill him; he was "insubordinate" when a teacher told him to stop horsing around with his Aspie friend and he refused; he brought a laser pointer to school; he's been disrespectful (blunt) to teachers; he made a gun out of his finger and poked it into his friend's chest...the list of "crimes" goes on. You get the idea. We do not have any real discipline issues at home but, then again, he doesn't have the same pressures. He's a very loving, secure child here; we "get" him and give him the freedom to be himself.
Here's the problem: my son is the one who speaks the word "autism" in whispers. He knows he's not like other kids. He doesn't share a typical 13 year-old's interests. He read Stephen King when his classmates were barely reading Harry Potter. He likes hiking alone through cemeteries and exploring woods while other kids are playing soccer. He writes scripts he intends to direct and dark poetry, devours resource books, can recite the names of every Academy Award winner for the last 40 years and owns every old-school video gaming console ever made. He loves stuffed animals. He's always been a loner but he's fine with it. Kids his age get on his nerves yet he desperately wants their acceptance, even while he's shunning their friendship and claiming they despise him. He's in Gifted but doesn't want to participate because he has already decided the other gifted kids are "freaks", even though he hasn't met them. He gets bored easily and goes out of his way to distance himself from trends and pop culture others loves but he claims he wants to fit in. He doesn't want to use his intellectual gifts or accept help for his deficits. I've explained that the label is necessary right now and he doesn't have to advertise it (I'm bipolar but share it only when I want people to know) but he doesn't want to hear it.
I'm used to battling school districts and clawing my way through the system to get help for my child but this is something totally different. How do I advocate for a kid who doesn't want to admit he's autistic? How do I get him to educate himself so he even knows what Asperger's is before he decides he doesn't have it? He won't even come to this site, let alone do any research on AS. How do you help a teenager who doesn't want the autistic resource support that I'm busy fighting for and which he obviously needs?
I won't allow anyone to break my son's spirit or change his nature. However, it's my job to prepare him to be get along in a neurotypical world, one which doesn't necessarily value minds which work differently. Please pardon my length here but, as you can tell, it's a topic about which I'm very passionate - and, at the moment, very frustrated. I truly appreciate any input you have to offer.
writergirl
11 Mar 2010, 10:29 am
I had somewhat similar problems with discipline in school and social integration in middle school (though I did not know I was autistic—hadn't been diagnosed until high school). Basically, middle school sucks and he'll just have to suffer through it. Don't worry, it gets better after that. Just encourage him to follow his interests, and try to impress on him that it's not worth the hassle when you do stuff that gets you in trouble at school.
_________________
WAR IS PEACE
FREEDOM IS SLAVERY
IGNORANCE IS STRENGTH
11 Mar 2010, 11:07 am
I will say this blatently. Middle school sucks for people with ASD.
In terms of his behavior. Ugh. It might be an idea to approach it differently, or else he can become real trouble. It sounds like he may have a co-morribund behavioral disorder. He sounds ALOT like my bi-polar brother in HS.
Here is my advice. It is time you stress to him that he is extremely bright, but he needs to start acting in a way that reflects his intelligence. That starting in HS things start to matter and his behavior is unacceptable.
I wish I could go into things more, but you really do need to address the behavioral issues find out what is causing them.
11 Mar 2010, 11:21 am
I think it's ok for him not to accept his diagnosis, so long as he is prepared to accept full responibility for his actions. Ideally all people, diagnosed or not should do this anyway; aspergers isn't a 'get out of jail' card for bad manners, but it's especially important if believes he is normal and wants others to view him this way.
I would suggest, if he thinks he is normal, treat him like an NT person; don't make any exceptions for his behaviour or let him get away with stuff another kid wouldn't. If he acts out or has a meltdown, punish him, don't make excuses.
He can't have his cake and eat it.
11 Mar 2010, 11:27 am
Well it is fairly simple. When in middle school, if your peers think of you as different or unusual in any way they will make you miserable for their own entertainment. To be honest rejecting pop culture really doesn't make your son stand out, there is an entire anti-popularity subculture, sometimes referred to as 'goth'. But if your son suddenly starts getting treated differently with things like special aides, special classes, or other things which set him apart then his class mates will notice it and make him miserable for it.
So, in reality it isn't the autism label that he is denying, its the fact that he doesn't want to be abused by his peers.
It may help to sit him down and tell him that you don't care what label your child has. It could be autism, or fluffy pink kitten syndrome, or anything, its just a name. What matters isn't what you call it, but just making sure that your son gets through life effectively without shooting himself in the foot by denying that he could use some help every now and then. It might also pay to tell your son some stories about yourself when you were younger, and how you shot yourself in the foot by avoiding help or ignoring advice.
If he gets the notion that your only trying to offer help rather then make him a social outcast, then he may be more interested in listening. And if he doesn't like the term autism, then don't use it. Just say that your son thinks differently, there is no special power imbued in any one name in particular.
11 Mar 2010, 12:18 pm
I desperately need input from people who have Asperger's Syndrome. My son is a terribly bright, funny and engaging 13 year-old who was dx'd with AS when he was 4 1/2. In my house, the word "autism" has never been spoken in whispers. I hate ABA, don't care what "causes" autism and take issue with anyone who suggests my son needs to be "cured" of anything. Asperger's doesn't need a cure; I'm not sure I'd say the same about neurotypicality. He knows I see AS as nothing short of a gift and people with Asperger's as essential components in moving our society forward. I don't want my child to be neurotypical, like me. Why would I? He's far more interesting and has more potential than most people I know.
Allow me give you a brief backgound. My son attends a regular middle school with virtually no autistic resource after spending preschool and K-5 in schools with autistic support. He likes school but they don't have a clue about the AS mind or what to do with him. Despite having a 1:1 aide, he's had six lunch detentions, three after-school detentions, two in-school suspensions and one three-day at home suspension - just this year. Today, he's in internal suspension for defacing school property; yesterday he put toilet paper all over the 6th and 7th grade boys' bathrooms after the school nurse said he was well enough to go back to class. All of his disciplinary problems at school have been the direct result of impulsive anger and a smart mouth. He made "terroristic threats" when he told another boy during an argument that he was going to kill him; he was "insubordinate" when a teacher told him to stop horsing around with his Aspie friend and he refused; he brought a laser pointer to school; he's been disrespectful (blunt) to teachers; he made a gun out of his finger and poked it into his friend's chest...the list of "crimes" goes on. You get the idea. We do not have any real discipline issues at home but, then again, he doesn't have the same pressures. He's a very loving, secure child here; we "get" him and give him the freedom to be himself.
Here's the problem: my son is the one who speaks the word "autism" in whispers. He knows he's not like other kids. He doesn't share a typical 13 year-old's interests. He read Stephen King when his classmates were barely reading Harry Potter. He likes hiking alone through cemeteries and exploring woods while other kids are playing soccer. He writes scripts he intends to direct and dark poetry, devours resource books, can recite the names of every Academy Award winner for the last 40 years and owns every old-school video gaming console ever made. He loves stuffed animals. He's always been a loner but he's fine with it. Kids his age get on his nerves yet he desperately wants their acceptance, even while he's shunning their friendship and claiming they despise him. He's in Gifted but doesn't want to participate because he has already decided the other gifted kids are "freaks", even though he hasn't met them. He gets bored easily and goes out of his way to distance himself from trends and pop culture others loves but he claims he wants to fit in. He doesn't want to use his intellectual gifts or accept help for his deficits. I've explained that the label is necessary right now and he doesn't have to advertise it (I'm bipolar but share it only when I want people to know) but he doesn't want to hear it.
I'm used to battling school districts and clawing my way through the system to get help for my child but this is something totally different. How do I advocate for a kid who doesn't want to admit he's autistic? How do I get him to educate himself so he even knows what Asperger's is before he decides he doesn't have it? He won't even come to this site, let alone do any research on AS. How do you help a teenager who doesn't want the autistic resource support that I'm busy fighting for and which he obviously needs?
I won't allow anyone to break my son's spirit or change his nature. However, it's my job to prepare him to be get along in a neurotypical world, one which doesn't necessarily value minds which work differently. Please pardon my length here but, as you can tell, it's a topic about which I'm very passionate - and, at the moment, very frustrated. I truly appreciate any input you have to offer.
writergirl
Could you possibly get an university student to mentor your son? Possibly your son would open up more with someone else. There is something that a person like this could provide - he would appear "cooler" to your son than your son's peers and yourself. I believe your son needs relationship building. I doubt it would happen with his teachers. There is too much negative history. People with autism need breaks. We need time to cool down, relax our thoughts about special interests and forget about social mistakes and impulsiveness. Sometimes, a new person with a fresh perspective , or even a new place with a fresh vibe gives a chance for some success and some hope.
His thoughts seem negative and cynical. It happens when you are constantly frustrated and put a lot of effort just trying to fit in. I think positive relationships and good social activity is needed. You have to be extra positive, because he probably wont be. Make sure you take note of some of his coping strategies with negative thoughts here --- they might be pent-up rage that gets lose at the end of the day, extra time with his interests, but they can get worse in high school, like smoking pot, eating too much or getting drunk. He really needs to develop positive coping strategies when he enters high school, such as exercise, being outside, listening to music and talking to adults about problems. You can teach him these things and not mention anything about autism.
11 Mar 2010, 12:19 pm
Show him examples of sucesful people with AS such as Temple Grandin (although technicaly she isn't AS). Tell him people such as Enstine and Newton are suspected of having AS. "Different Like Me: My Book of Autism Heroes" by Jennifer Elder and "I Am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism" by Elaine Marie Larson are good books you might like to read to him or let him look at. There are others as well.
Let him come to terms with his diagnoses on his own and never scorn him for his AS. Remind him constantaly that you love him unconditionaly and you love his AS as well.
11 Mar 2010, 12:31 pm
Its noble of you to say so, but I'm afraid that ultimately , that's not gonna be your call. You simply can't be there forever, fending off demons. Sooner or later, one sinks or swims. As for changing his nature, no one will ever do that because his 'nature' is hardwired into his brain. Even he can never change that. And however badly he wants to believe now that he's not different, life will show him otherwise - repeatedly and in ways he cannot forever deny. If he wants to pretend he's pretty much like his peer group for awhile, allow him the delusion. Once it's gone, he'll face a lifetime of alienation. What's the hurry? He already knows the truth.
Well, I went through school long before there were aides and 'Autism Resources', so I don't know how much you really can do in that regard. I will say, I've been here on WP for about two years now, and I have yet to see anyone remark on how much that aide did to help prepare them for real life, or how they never would have made it through school or been able to get or keep a job if not for all the Autism Resources they received. There are certain things I probably would have benefited from a little help with in school, but at the end of the day being treated as if I was just like everyone else and expected to behave and perform by the same standards probably did as much as anything to give me survival skills.
That said, I have always lived at the periphery of society, and still ultimately have reached a point at which I simply cannot adequately function - that is to say, pretend as I might to be one of them, they have survived the game, and I have fouled out. Even those here who might raise their hands and say "But I'm doing okay" have yet to reach retirement successfully. I might have said the same ten years ago. We will see.
The neurotypical mind not only doesn't value minds that work differently, they ostracize and punish the different. Not just in Middle and High School - the behavior you see there continues until they're nailed in their coffins. It's alive in the workplace, in church, at the voting booth and it pervades the culture and is celebrated in the media. Your son will get along as best he can because he has to - there is no secondary protocol. The best you can do is find what special interest(s) can be shaped into a career that provides as much solitude and as little supervision as possible and encourage those interests. He will probably still need assistance periodically, but if he can find a suitable career, he can have a relatively normal adult life, at least for many years. Most important is that he find a way to use the gifts he has for something meaningful. Being different can be tolerated, even enjoyed and celebrated. Being useless is the horror to be avoided at all costs.
11 Mar 2010, 1:16 pm
If he wants to be normal, treat him as if he were normal.
Although I think desperately wanting acceptance is stupid, I can understand not wanting to be bullied.
Overall, he is not making any sense.
He is already being punished for his misdemeanour, and it isn't deterring him.
Treating him as if he were normal is a stupid solution. If for example he melts under sensory overload, punishing him is a stupid gesture.
I'd say allow him to come to the realization by himself that he is not and won't ever be NT. Right now he's probably just conflicted and relying more on raw emotion than thinking, hence on one hand wanting to be normal and the other rejecting normal people.
_________________
'You're so cold, but you feel alive
Lay your hands on me, one last time' (Breaking Benjamin)
11 Mar 2010, 1:21 pm
It bothers me that you are so dismissive of his misbehavior at school. The things you describe *should* be punished, and he won't be able to function well in society unless he understands that for every action he is going to get an equal and opposite reaction. That is despite how brilliant he is, which I have no doubt of.
As for the semantics of whether he has Asperger syndrome or not, that may be irrelevant depending on your needs.
I wish I had more to say, but he sounds a lot like me at the same age, and I just had to tough it out. Maybe it would help if he had an older role model who was enough of a bad ass to not get dismissed as uncool, but intelligent enough to engage him.
11 Mar 2010, 2:30 pm
I have a few more thoughts..
When you have an impairment at social functioning, then avoiding social functioning can be a premiere coping strategy. I would not allow anymore of the in-school suspensions or anything like that. If they have to punish him, make him stay after school or teach him personal responsibility through restorative justice. If I knew that I could get a day off of the stress of being an adolescent, I would get in trouble too. I'm guessing you don't have problems at home because there is more routine in social situations and he has a place to go when he is burn-out, something he doesn't have at school.
Think about his sensory issues as well. This is a hard one, because even people with ASD's don't realize their sensory problems. For me, the classroom is too loud to do quality work, so when I was young, I left it until I went home and goofed off all day.
He may not want to admit that he is autistic, and he is going to take the hard(er) road because of this. Let him learn the hard way, but don't give up on him and don't let him go too far.
Williard makes a good point about the aides. Some aides are really good, but sometimes they just an excuse by teachers to get children out of the class and the children become dependent on them. Possibly you should consider a more focused interventions by professionals, such as social training by an occupational therapist.
His school experience seems way to negative and entirely focused on his weaknesses. I would ask the school to make a strength-based IEP. Instead of focusing on the negative things that he does - being impulsive and rude, teach him positive things to do at school - ex. helping the teacher, giving compliments and focus on that as goals.
11 Mar 2010, 3:05 pm
Not going to get involved in this one. Just to say huge thanks to NT parents raising mini-us. We don't ever appreciate what you are going through until we have to deal with it ourselves.
I have raised two Aspi-NT hybrids and they seem to be doing OK now. School really sucked for me though afraid I have to say that.
Funny thing is if there was a way of telling an NT parent what you are and getting them to accept
you aren't changeable then there would be no problem-. " Hey I know you really wanted a dog but you know, foxes can be cute as well, and we can lean not to to chew your carpets. "
11 Mar 2010, 3:21 pm
I had a hard time in middle school too. I was never diagnosed with AS. I am 37, so when I was little it didn't exist, and I was grown and in the military when it became a named disorder. Middle school is a hard time for all kids, and being autistic makes it even worse. I really wish I could give you some great trick to help all this go away. Your problem with him sounds like typical 13 year-old hormonal influx and puberty combined with AS. I feel for you both. I am actually glad that he is acting out (i hate saying it though) because I didn't- I kept it all in and I tried to commit suicide at around the same age. My parents had no idea.
The good news is that things got better. My high school years were easier, and your sons could be too. I hope they are. Keep encouraging his good times and punishing him for being a little ass at school. Keep fighting for him. Do you have regular counseling for him?
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