To tel or not to tell my teenager that he has AS?
Lnb1771
Yellow-bellied Woodpecker
Joined: 19 Sep 2011
Age: 53
Gender: Female
Posts: 74
Location: United States
There can be a HUGE explosion of resentment and feeling of a breach of trust in that.
It hurts, a LOT, to find out that important information about yourself was known yet withheld for years. Be careful about that plan.
I feel that you should have told him as soon as you heard it yourself, but now I dont know what would be a good time. I'm not thinking years though. This should have been out there a long time ago.
You need to bring it up asap. It doesn't have to be a heavy conversation. The label doesn't change the fact that he's doing great at the moment.
I speak as someone whose parents withheld sh!t and the mess of negativity that came busting out when I had to find out myself is still with me.
.
I started asking questions when I was 5, but I wasn't really told the truth until I was 12. I feel like if they had told me sooner it could have "normalized" it for me, instead of learning at the cusp of adolescence.
Good to hear that your boy is doing well.
Like others, though a word of caution: So what happens if you are autistic and don't know it?
Even if you get very good at compensating, there will always be moments, circumstances, environments in which you react in a noticeably atypical way.
When you don't know why, this can be quite disturbing.
You may find a curious special resonance for you in the Thriller video when Michael Jackson says, "I'm not like other boys." (am I dating myself with this reference?)
You may feel a strange dread when discussions of "difference" come up.
You may find an odd recognition when you read H.P. Lovecraft's tale "The Outsider."
You may find an inexplicable mix of achievement and failure in various areas of life. Failed relationships, bad work situations and a dread of entering the company cafeteria alone.
You may find that the question of why you are different keeps nagging at you, gnawing at you and makes you wake in cold sweats from anxiety dreams.
You may be driven to seek a diagnosis at considerable expense later in life and you may wish that you had been armed with knowledge so that you could have met the challenges of this particular kind of life with more understanding and preparation. ]
You may wish that you had not been sent out into life like a blindfolded sheep among heavily armed wolves.
It's definitely not an exaggeration. I was just thinking what an accurate statement it was.
A person with Asperger's doesn't pick up certain information.
A person who doesn't know he has Asperger's doesn't pick up certain information, and doesn't know he's missing anything.
It really is like blindfolding a sheep.
Lnb1771
Yellow-bellied Woodpecker
Joined: 19 Sep 2011
Age: 53
Gender: Female
Posts: 74
Location: United States
This was me when I was a cook in the Army. I worked 16 hour days and got very poor sleep for the year I was in Korea. We were in small quarters and I rarely got any alone time to decompress. The result is that I got severely depressed and would "act out" leading up to disciplinary action. My sergeant wrote on one of my write ups that I had "disturbing mannerisms!" If that doesn't sum up autism to an outsider who isn't very understanding, then I don't know what does.
I think in my situation of not telling me until age 12 and then telling me that I'm "recovered" has done me a disservice. I spent my adolescence in extreme anxiety (phobias and insomnia) and depression (suicidal ideation). With a autism diagnosis still in effect, I might have had more services available to me. But it was in the researchers' interests to convince my parents that I was recovered. It helped with their success rate and is why the Lovaas method was touted at being 47% successful.
Autism would also probably explain why I bounced from menial job to menial job despite being educated and intelligent. An exception to this was when I taught a class of undergraduates. I had a student complain about me rocking back and forth while I lectured. I told him it was because my feet would hurt, but it was more than likely a result of the autism and my feeling anxious in front of a room full of 18 to 22 year olds. I tried to get SSI recently but I did "too well" on the psychological test, which wasn't a test specific to autism. I have proof of my diagnosis from my childhood and even included it in my paperwork. <sigh>
I worry about this a lot - the diagnosis didn't exist when I was a kid, so I never had the option, but most people would frame me as "recovered," because they don't see that when I'm working I spend the entire weekend basically in bed sobbing, and that now it takes me a good four days to recover from any kind of interaction (even positive ones) with other parents.
The reason I worry is that the "recovered" trope is out there and people are applying it to themselves (see http://www.nytimes.com/2014/08/03/magaz ... utism.html ) There is a gigantic difference between "compensating" and "recovering." Our society so wants to believe that you can wish away disability that we would prefer that people suffer than that they acknowledge that compensating for a disability costs them something (like, for instance, that prosthetics are often painful even though they offer the same or better motion, or can cause other health issues.)
I'm not trying to frame autism as solely a disability, mind you: I had a conversation with my therapist where we talked about it having two aspects - in one way, it's kind of like being left-handed: the world is designed for NT people, and it doesn't quite fit for us even if our way of doing things is perfectly valid or even better. In other ways, though, it IS disabling: for instance, it is actually incredibly painful for me to start a task, any task - often even tasks I like doing; and there is no upside to that.
Lnb1771
Yellow-bellied Woodpecker
Joined: 19 Sep 2011
Age: 53
Gender: Female
Posts: 74
Location: United States
I worry about this a lot - the diagnosis didn't exist when I was a kid, so I never had the option, but most people would frame me as "recovered," because they don't see that when I'm working I spend the entire weekend basically in bed sobbing, and that now it takes me a good four days to recover from any kind of interaction (even positive ones) with other parents.
The reason I worry is that the "recovered" trope is out there and people are applying it to themselves (see http://www.nytimes.com/2014/08/03/magaz ... utism.html ) There is a gigantic difference between "compensating" and "recovering." Our society so wants to believe that you can wish away disability that we would prefer that people suffer than that they acknowledge that compensating for a disability costs them something (like, for instance, that prosthetics are often painful even though they offer the same or better motion, or can cause other health issues.)
From the article:
His mother says that whenever she mentions that Mark once had autism, people look at her as if she’s delusional. “Even doctors say, ‘Well, he must have been misdiagnosed, because a person can’t stop having autism,’ ” she said.
This is what I run into when I self-disclose.
Also from the article is something I've wondered since 1987 (age 16):
Dawson wondered whether steering autistic children’s attention to voices, gestures and facial expressions could alter their brain development. So in a randomized clinical trial published in 2012, she tracked two groups of autistic toddlers: one that received 25 hours a week of a behavioral therapy designed to increase social engagement, and a control group that received whatever treatments their community offered (some behavioral, some not). After two years, electroencephalograms showed that brain activity in the control group still strongly favored nonsocial stimuli, but the EEGs of the social-engagement group were now similar to those of typically developing children.
Apparently the brains do change.
I think that diagnosing autism simply on the basis of behavior doesn't account for coping mechanisms. Also, even if I no longer meet the diagnostic criteria for autism, I still feel like I have residual difficulties that could benefit from support.
Thanks for posting that article. It answered some questions.
All this has to do with the concept of "brain plasticity."
The younger a person, the "plastic"--flexible the brain is. This is the principle behind Early Intervention within the treatment of such conditions as autism.
It's also why kids who come from a foreign land don't maintain their "accents" when they learn the dominant language. A person coming into a "new land" when he/she is 3 probably will not develop an "accent." After puberty, though, for some reason, the "accent" remains, despite how proficiency a person becomes in the "new" language.
BirdInFlight
Veteran
Joined: 8 Jun 2013
Age: 62
Gender: Female
Posts: 4,501
Location: If not here, then where?
Like others, though a word of caution: So what happens if you are autistic and don't know it?
Even if you get very good at compensating, there will always be moments, circumstances, environments in which you react in a noticeably atypical way.
When you don't know why, this can be quite disturbing.
You may find a curious special resonance for you in the Thriller video when Michael Jackson says, "I'm not like other boys." (am I dating myself with this reference?)
You may feel a strange dread when discussions of "difference" come up.
You may find an odd recognition when you read H.P. Lovecraft's tale "The Outsider."
You may find an inexplicable mix of achievement and failure in various areas of life. Failed relationships, bad work situations and a dread of entering the company cafeteria alone.
You may find that the question of why you are different keeps nagging at you, gnawing at you and makes you wake in cold sweats from anxiety dreams.
You may be driven to seek a diagnosis at considerable expense later in life and you may wish that you had been armed with knowledge so that you could have met the challenges of this particular kind of life with more understanding and preparation. ]
You may wish that you had not been sent out into life like a blindfolded sheep among heavily armed wolves.
My god, Adamantium just described my life. This ^ ^ ^ .
That would probably explain why kids from other countries (most notably England and China) as well as babies and toddlers in general always seemed to take to me instantly... and why I have struggled the most with my own demographic my whole life.
I need to explain: we are Italians, and until a few years ago very few physicists actually knew about the syndrome and still most don''t. The same with teachers.
I always knew (or suspected) my little boy was on the spectrum, and through the years I had him tested three times (at 3, at 9 and again at 13) and only the last time did I receive an Asperger diagnose, although at 9 I had insisted on it but no one listened to me.. No surprise to me, but a confirmation. and all the pieces of the puzzle going in place... I guess you know the feeling.
The thing is, i am not sure i want to tell him, and i am going to explain why.
My now teenager has had all the typical problems through his school years (acting and feeling very different, difficulty to socialize, bulliyng, constant fight with a teacher who just hated him, you name it).
At 13 ho got very depressd. Wanted to be accepted, to be like other teenagers, to socialize.
And, HE DID! Last year he challenged himsef by going on an intercultural trip to Brazil for a month, without knowing anyone. Right now he is in UK on a 3 week English learning vacation. He wanted very much to go, although it takes a big effort on him, being with unknown people 24 hours.
At school ho stopped being worried by the bullies. He made several friends. O course he has a limited social life, it is not like he is going out every day with other people, but he sometimes does e people actually call for him.
At shool he does quite well, although being a little on the lazy side and being very lucky with his formidable memory.
My conclusion, at the moment is this: he very much wants to be like other people, is there any use for me to tell him, od his future teachers? I think not.
What do you tink? I am very much interested in other parents opinion...
wait until he's 18 or so (basically until puberty is done).
i remember feeling different was a good reason for why i tried to commit suicide at that age mostly not wanting to be an (i'm using the words i would have used at the time because i feel like its part of my story and the emotions i was feeling the time so i'm not going to censor it) ret*d fa***t. i think i was fine with it up until about ten and then my emotions radically changed as i went through puberty and wanted to be more normal. if i could have had people hide that i was bi from me until puberty was over i think that would have been amazing. i mean being able to have that fantasy of a normal life at that period of time for anyone i think would just make everything a lot easier for most kids. i think if you had told him as a small child it wouldn't have been bad in fact my parents did and i am glad they did but i think now is the worst time in his life you could possibly tell him.