Ex husband wants to tell 9 year old son he has autism

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cathylynn
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21 Sep 2015, 3:58 pm

at 9, i would want my parents to tell me. them holding such a thing back would decrease my trust in them when i did find out. unless he is a very immature 9.



Ettina
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21 Sep 2015, 3:58 pm

Firstly, you say he's 'recovered'. But I've heard accounts from autistics who were thought to have 'recovered' from autism in childhood, only to realize as they get older that they really are still autistic and as demands on them increase, their shaky feigned normalicy falls apart. At any point when the demands on your son suddenly change (when he hits puberty, when he goes to junior high, when he starts looking for a date, when he leaves home, etc) he could suddenly begin to struggle. And he'll need to know why in order to be able to figure out how to deal with it.

Or he might already be struggling in ways you don't know about. Kids are far better at picking out which kid is 'weird' than adults are, and the training in social skills that is often given to autistic kids doesn't tend to line up well with how most kids actually behave. And a lot of kids don't tell parents if they're being bullied or if they have no friends - it's seen as 'tattling', and plus if the kid blames themselves (and a kid who's been trained to act 'normal' almost certainly will blame himself for being socially rejected or bullied) they may not want to admit their 'failure' to an adult.

Plus, there can be internal struggles. Many autistic people find eye contact painful or disorienting or otherwise unpleasant, for example. I've heard of autistic people who were taught to make eye contact and regularly do make eye contact, but still find it painful or whatever. So every time they make eye contact because that's what they're 'supposed' to do, they pay an internal price. And there are a lot of other autistic traits like this. What autism therapies tend to overlook is that autistic behaviour is not 'purposeless' - if a kid is flapping their hands and avoiding eye contact and humming to themselves, they're doing that stuff for a reason, and teaching them not to do those things doesn't remove the underlying reason they did them. It's quite possible that your son might be exerting conscious effort on a regular basis to act 'normal' because that's how he's been taught to act, without realizing that other people are actually enjoying these tiresome chores he does all the time, or that they find all this stuff 'easy'.

If he's not actually 'recovered', he most definitely needs to know about his diagnosis now. He's almost into his teens, and teenagers have an especially strong need to understand themselves. If he doesn't know why he's different, that will make his teen years a lot harder.

And if he is truly no longer autistic? (Which, if this is the case, would not be due to all the therapies, but to a natural maturation process only a small minority of autistic kids experience.) Well, then, it's not going to hurt to tell him. I mean, people tell their kids about being born prematurely or being conceived by IVF, and those kids grow up just fine. (And they usually tell them far younger than age 9 - many of these kids never remember a time they didn't know.) Plus, it's his story. He should know what happened.

Just make sure you don't tell him it as a bad thing. It really isn't a bad thing to be autistic, or to be a kid who's outgrown autism. It just makes you different. Unfortunately, it's possible all those therapies have already told him it's a bad thing to be autistic (without ever saying the actual words), in which case, I hope you can face that and help him undo the damage.



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21 Sep 2015, 4:04 pm

Tell him about it while explaining it in positive terms such as a difference and how it may mean he needs more help with x but that he has lots of good qualities. (To be clear, I, not a die-hard 'don't call autism a disability' person, but if you don't want your child to stress about the diagnosis then don't make it into a big negative thing.)

If anything, it's best to tell him young - while he's perhaps less aware of the stereotypes and can forge his own identity without having to reconcile autism into it later. Much like hiding adoption from children to protect them (even with the best intentions) causes more trouble than it's worth, this will too. Especially if your doctor and ex are still seeing signs.

It's well known that some with autism don't have glaringly obvious difficulties until they reach tween/teen years - it may be that your son gets caught out again in future years.

By 14 I was very anxious about the possibility of having autism. It didn't do me any good to worry about approaching someone to talk about it. In my case I wasn't diagnosed until 20 and the whole affair was stressful.

By contrast I learnt that I had a hearing loss and needed hearing aids at 7. I was furious and angry at the time but quickly enough I was proudly showing them off (though I didn't like to actually wear them) and took it all in my stride.

Let the message be 'you are different and there is nothing wrong with that' rather than 'I can't do x like my peers, I must be stupid/lazy/broken'. Especially if he's been to lots of therapies and doesn't know why.



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21 Sep 2015, 4:06 pm

Quote:
I feel like he is too young to fully grasp what autism is and this will make him feel different amongst his peers. Why make my child feel like he is different?


If anything you've waited too long already. Peers start to pick up on differences and ostracize/bully autistic kids in early elementary school. Your son likely already knows, to some extent or another, that he is different because people likely treat him differently. The diagnosis does not tell us that we are different. We know that almost our entire lives. The diagnosis tells us why we are different.

Also, be careful about putting too much on him not currently displaying a lot of outward signs. For one, we tend to be very internal in the way we process things. Things may not be as easy for him as they seem to you outwardly. Second, look into autistic regression/burnout. Often when autistics are doing a good job passing for neurotypical, it is because we have developed a complex structure of routines and rules to function in our surroundings. When surroundings or circumstances change, it can be catastrophic for that support structure.



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21 Sep 2015, 4:18 pm

While I'm not suggesting that anything so dire would happen to your son, I think JK Rowling covers the concept of 'how old is old enough' and the preservation of innocence despite good opportunities for sharing important information.

"“Yet there was a flaw in this wonderful plan of mine,” said Dumbledore. “An obvious flaw that I knew, even then, might be the undoing of it all. And yet, knowing how important it was that my plan should succeed, I told myself that I would not permit this flaw to ruin it. I alone could prevent this, so I alone must be strong. And here was my first test, as you lay in the hospital wing, weak from your struggle with Voldemort.”

“I don’t understand what you’re saying,” said Harry.

“Don’t you remember asking me, as you lay in the hospital wing, why Voldemort had tried to kill you when you were a baby?”

Harry nodded.

“Ought I to have told you then?”

Harry stared into the blue eyes and said nothing, but his heart was racing again.

“You do not see the flaw in the plan yet? No... perhaps not. Well, as you know, I decided not to answer you. Eleven, I told myself, was much too young to know. I had never intended to tell you when you were eleven. The knowledge would be too much at such a young age.

“I should have recognized the danger signs then. I should have asked myself why I did not feel more disturbed that you had already asked me the question to which I knew, one day, I must give a terrible answer. I should have recognized that I was too happy to think that I did not have to do it on that particular day... YOU were too young, much too young.

“And so we entered your second year at Hogwarts. And once again you met challenges even grown wizards have never faced: once again you acquitted yourself beyond my wildest dreams. You did not ask me again, however, why Voldemort had left that mark on you. We discussed your scar, oh yes... we came very, very close to the subject. Why did I not tell you everything?

“Well, it seemed to me that twelve was, after all, hardly better than eleven to receive such information. I allowed you to leave my presence, bloodstained, exhausted but exhilarated, and if I felt a twinge of unease that I ought, perhaps, to have told you then, it was swiftly silenced. You were still so young, you see, and I could not find it in myself to spoil that night of triumph...

“Do you see, Harry? Do you see the flaw in my brilliant plan now? I had fallen into the trap I had foreseen, that I had told myself I could avoid, that I must avoid.”

“I don’t –”

“I cared about you too much,” said Dumbledore simply. “I cared more for your happiness than your knowing the truth, more for your peace of mind than my plan, more for your life than the lives that might be lost if the plan failed. In other words, I acted exactly as Voldemort expects we fools who love to act.

“Is there a Defense? I defy anyone who has watched you as I have - and I have watched you more closely than you can have imagined - not to want to save you more pain than you had already suffered. What did I care if numbers of nameless and faceless people and creatures were slaughtered in the vague future, if in the here and now you were alive, and well, and happy? I never dreamed that I would have such a person on my hands.

“We entered your third year. I watched from afar as you struggled to repel Dementors, as you found Sirius, learned what he was and rescued him. Was I to tell you then, at the moment when you had triumphantly snatched your godfather from the jaws of the Ministry? But now, at the age of thirteen, my excuses were running out. Young you might be, but you had proved you were exceptional. My conscience was uneasy, Harry. I knew the time must come soon...

“But you came out of the maze last year, having watched Cedric Diggory die, having escaped death so narrowly yourself... and I did not tell you, though I knew, now Voldemort had returned, I must do it soon. And now, tonight, I know you have long been ready for the knowledge I have kept from you for so long, because you have proved that I should have placed the burden upon you before this. My only Defense is this: I have watched you struggling under more burdens than any student who as ever passed through this school and I could not bring myself to add another - the greatest one of all.”" - JK Rowling, Harry Potter and the Order of the Phoenix.



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21 Sep 2015, 4:28 pm

I'm curious about you, mother of 9 year old. What kind of climate did you grow up in? Were important secrets kept from you? Were you particularly pressured to conform to "normal" by parents whose particular concern was "whatever will the neighbours think?" Were you driven to "stamp out" signs and behaviours associated with your boy's difference as quickly as possible? Is your non-profit dedicated to the same goal of 'correcting' or eradicating autism? How did you actually achieve this with your son? Do you think Autism is a disease or something else? What are the aims of your non-profit? What role do you play in it? And finally, have you met and spoken to any adult people to learn about Aspergers Syndrome from source (which I am assuming your son had?) Which
professionally written books on the ASD spectrum have you consulted and learned from? What has been your principal source of information about ASDs?

So many questions! However it is best to start at the beginning, with you, and then your son. It would give us a more complete picture with nuances that are not yet transparent here.



AnotherAlex
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21 Sep 2015, 4:34 pm

Hi everyone! I've been lurking for a while on this forum, but I just had to register to reply to this post.

Hi Autism333 in particular. I'm also the parent of an autistic child, so your situation touched me very strongly.

autism333 wrote:
I'm in a predicament. I'm a mother of a child that was diagnosed with autism at the age of 2. As parents we worked extremely hard with top doctors and specialists in autism to help him overcome his diagnosis.


You cannot "overcome" autism. Autism is not curable. If your son is autistic, then he IS autistic, and he always will be.

Quote:
Now my child is 9 years old and displays no signs of autism.


The emphasis here is on "displays". He's been trained well enough that he doesn't show obvious signs of autism. That doesn't mean he's any less autistic than he used to be, though. It just doesn't show as much because he's learned to fake being "normal". You have to be aware, however, that faking being NT is *tiring*. Your child constantly has to repress his natural ways, and to play a part, and this is stressing and tiring to him. Just because it doesn't show, doesn't mean it's not happening.

Also, he's 9 now, which is the "easy" age as far as growing up goes, in-between the fast development of early childhood and the hormonal storm of puberty. So he can fake it well enough for now, but there's no guarantee he'll still manage to fake it as well once he hits puberty.

Quote:
My son has recently asked a lot of questions that pertain to my work with my non profit organization that deals with children with autism, ADD/ADHD, Epilepsy, etc. and is starting to question what they are.


Have you considered that he might already have made a connection, however vague, between the children being taken care of by this organisation, and himself? It might not be a coincidence at all that he's asking you about your work.

Quote:
The issue is now my ex-husband feels that our son is ready to be told about his autism. I completely disagree with him on this. I feel like he is too young to fully grasp what autism is and this will make him feel different amongst his peers. Why make my child feel like he is different?


As others have already said: he's most likely already aware that he's different. Look at the name of this website: this is where people with autism often feel they come from - and this includes your child. You won't make your child feel different by telling him: you'll just help him understand *how* he is different, and in particular, that there's nothing wrong with him.

Also: if not now, then when? *When* are you going to tell him? Do you have precise criteria which you are waiting for, which will tell you he's "ready", or do you just want to wait for as long as possible?

Quote:
My question to all of you is, if you are autistic, would you wish to know that you are autistic? Or better not knowing if you aren't displaying any signs?


First, it's impossible for an autistic person not to display any sign *to themselves*. An autistic brain is not wired like an NT brain, and never will be, so an autistic person is always going to be different from an NT person, and be more or less aware of it. Your son IS aware to some degree that he's different, and the more complicated and stressful his life becomes, the more aware of it he will be. (For example, you mention that he had loads of therapy. Well, sooner or later, he's going to realise that most other kids didn't have to go through that, and so he'll know there was something very weird with him as a little kid.)

Second: I'm in the process of getting myself assessed for Asperger's, but I already have zero doubt I have it. And yes, oh yes! I wish I had been diagnosed as a kid, and given therapy like my son receives! He's so much more relaxed and happy than I was at his age (he's 12), because he knows in which ways he's different, how to deal with the differences, how to deal with his autism in general, and that there's nothing wrong with him. He knows how to fake being NT in public, but he also knows he can relax and be his natural self at home. He knows that it's because of autism that he has some handicaps, but that it's also thanks to autism that he has some special abilities. He's able to fully appropriate HIS autism, with all its blessings and curses.

Your son is autistic. He will always have autism. You will have to allow him to appropriate his own autism someday too. And I personally think now is the perfect time, when he has nothing else on his plate. A few more years, and he will have to deal with puberty, at which point either you tell him about his autism and he then has to deal with *two* big things at once, or you don't tell him and he has to deal with puberty and those difficult teenage years without knowing why he's so different from the other kids around him. Either way, that's not a nice nor supportive thing to do to him. If you tell him now, he will have time to get used to it before the difficult years happen. If you don't tell him now, it will only make it worse for him when he finally learns about it.

One last thing: would you manage to explain to him about the work you do for the organisation, and yet hide his own autism from him, without lying? Because children with autism tend to get quite upset when they realise someone they trusted lied to them. So whatever you do, please do not lie to him, please!



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21 Sep 2015, 4:35 pm

Is it that he's not displaying any signs....or that he's suppressing himself and going through lots of stress trying to seem 'normal' whilst feeling very different inside? I think it can be helpful to know....also autism isn't a diagnoses you 'overcome' its a life-long condition that doesn't go away, it is certainly possible to reduce more unpleasant symptoms and work with the condition to still lead fulfilling lives. I certainly found it helpful to know....sort of wish I had found out long before the age of 23 though, but on one hand I am kind of glad because then there may have been a lot more focus on trying to make me 'normal' which I may have hated even more than being weird but no one forcing 'normal' behavior.

I mean your child should feel like you accept and love him, autistic or not...keeping the diagnoses hidden and having him gradually find out probably would not give that impression. Also the problem isn't feeling different its feeling that its wrong to be different at least from my perspective.



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21 Sep 2015, 4:50 pm

Gig is up. His curiosity is going to lead to him finding out via Internet and classmates as to what autism is. He will receive a lot of misinformation from these sources.


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21 Sep 2015, 4:56 pm

I just want to add that if I was the Ex, this wouldn't be a discussion. I would have already told him, despite the objections from anyone else. It's not fair to keep it from him.



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21 Sep 2015, 5:02 pm

If he's 9 years old and high-functioning enough to display few to no observable signs of autism (I don't care what you've been told; it might become virtually invisible-- always at a cost-- but autism does not go away), he's old enough and more than capable enough to have the knowledge.

I cannot begrudge my folks not telling me. I was born in 1978 and was always pretty mildly affected; in other words, prior to 1994 there was nothing to tell. By the time there was, I'd learned to cope well enough that I could have evaded diagnosis forever had I chosen to be slightly dishonest on the tests (I was 19 when I first suspected and 33 when I finally got a formal Dx). Notwithstanding, all my life I had the sense that there was something "wrong," or anyway atypical, with me.

Even an autistic kid, by 9, isn't blind to the fact that they're different, even if only slightly, from their peers. That difference is only gonna get clearer (and more painful) with puberty.

Given the stigma that surrounded HFA/Asperger's in the first two decades of its clinical existence, I might be glad I didn't know. I might have given up on myself, I don't know.

That's getting better, though. Slowly.

I can tell you what I DO know. I think I would have rather known, than have spent 20 years hearing "There is nothing wrong with you!!" only to find out that, actually, yeah, there is something wrong with me. I think it would have been easier to swallow at 9 than at 19. I think I would have rather had the information while my self-image was young and flexible, before I'd spent all that time berating myself for not being/convincing myself I was normal.

I think if it were my kid, I would rather have them fight the self-esteem issues and the stigma while they're little and still living under my roof where I can protect and guide them than have it hit them like a dumptruck load of septic s**t when they're "grown up" and there's relatively little I can do.

I can tell you that I told my son (now 8 ) about his ADHD from the word "GO" (he was 5 at the time). I look at it like this-- Let's say you've got a car to give away, and you're going to give it to your best friend. Let's say it's a no-name car-- a Focus, or a Cavalier, or a Camry or something. If it's been souped up for street racing, you're going to tell them that-- you care about this person, so no surprises. If the engine blew up 20,000 miles ago and was rebuilt and it runs fine except that you have to add a pint and a half of oil every 1500 miles, you're going to tell them that-- you care about this person, so no surprises. You care, so you want them to know the car has special handling instructions.

Well, if the kid is in fact autistic (regardless of whether he's "indistinguishable" from a behavioral standpoint or not, it's still in there), his brain has special handling instructions. Best he know what those are-- or at least what words are on the manual, should he need to find out.


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21 Sep 2015, 5:11 pm

In his book, Freaks, Geeks and Asperger Syndrome, Luke Jackson described his reaction to being told he had Asperger’s Syndrome in the following way.

“I finally knew why I felt different, why I felt I was a freak, why I didn’t seem to fit in. Even better, it was not my fault!…Mum could have saved me a lot of years of worry because I always knew I was different.” (Jackson, 2002)

It's not yet too late to save your son those years of worry..



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21 Sep 2015, 5:41 pm

He should have been raised with this information being incorporated into conversations as soon as he could understand, the same way adopted children today are openly told things like "You didn't come from Mom's body like your sister, but we chose you and love you just as much."

Tell him right now before any more years tick by in which this poor kid is bravely putting on an NT front but probably wondering why that feels harder than it seems to be for actual NT kids. Or before a more challenging phase in life -- such as the teen years, trip him up and stuff starts to sneak out at the seams. Stress can make even a well functioning spectrumite actually seem to do something very akin to "reverting" in terms of symptoms being less easy to cope with or repress if they were repressing.

Tell him now before this secret BS goes on much longer or he will NEVER trust you again, trust me.


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21 Sep 2015, 6:35 pm

I am a father of 3 boys, oldest is about to turn 8. All kids are different maturity but I would think he is old enough based on my boy. Just make sure not to tell him what he can't do.

Growing up I always felt different, but never could figure out why. People always seemed to know what to do in situations and I struggled. People seemed to react to certain situations with emotion while I was wondering why, and what was wrong with me that I wasnt feeling what they were. I know it was about 11 where I really started to notice things.

I am now 37 years old, recently separated and have seen a psychologist for the first time. He very quickly suspected ASD. Now the more I read the more my life is falling into place. I am now understanding I am not some weird freak.

At 9 he is going to need to know and fairly soon if not a while back. Your son does have one thing going for him in that he seems to have two parents who support him in his differences. Unlike me. But in all by the time you notice that he may need to know due to stresses he is under it will have been going on for a long time.



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21 Sep 2015, 7:39 pm

It's not so much being told you're autistic, and then your whole world shatters ... rather, the world stays the same, but you have words to express your experience.

autism333 wrote:
...As parents we worked extremely hard with top doctors and specialists in autism to help him overcome his diagnosis.
...The issue is now my ex-husband feels that our son is ready to be told about his autism. I completely disagree with him on this. I feel like he is too young to fully grasp what autism is and this will make him feel different amongst his peers. Why make my child feel like he is different?

A person feels the way they feel, perhaps it is you who fears he is different or, at least, the repercussions of acknowledging his way of experiencing the world is different.

You don't overcome an autism diagnosis. That's like telling a black person to overcome being black.

He already grasps autism more than you do. He is experiencing it.

Unless he was misdiagnosed ... can you explain how he has transitioned?