Suggestions on Telling Son he Has Asperger's

Page 2 of 2 [ 25 posts ]  Go to page Previous  1, 2

Aimee529
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

Joined: 16 Oct 2015
Age: 37
Posts: 73
Location: Florida

27 Oct 2015, 1:28 am

I don't have too much to contribute, but I am getting to that point myself... I have Aspergers, and I have 2 kids on the spectrum (one of which, my daughter, is almost 8 ). When I was growing up I was misdiagnosed with ADHD and an Auditory Processing disorder. I had some major self-esteem issues despite my parents' absolute BEST efforts and being in a school situation that was pretty good socially speaking, but I could tell I was different because I didn't learn things the way everyone else did and I just didn't "fit." Kids know these things! And it makes sense in a school setting because you group peers to instruct them in the same basic way in hopes for similar outcomes... Fast forward to my own children... Some things I have done like my parents did with me (a high compliment in my opinion), but there have been things that I have chosen to do differently... Probably one of the biggest differences (other than diet) is that I chose to homeschool my kids (at least for now anyways). We've seen some good things come out of it (I am not trying to sell anyone on the idea)....my daughter's self-esteem is MUCH higher than mine was....and honestly I feel like it is because she is taught in the way and order in which she learns and doesn't end up dealing with quite as much over-stimulation (it is one thing to try and keep up with the development of NT kids...it is quite a different thing to try and keep up with the development of NT kids in environments that are over-stimulating). So....I feel good about that.... But now I am not sure when/how to explain Autism/Aspergers....maybe I don't need to since 1) She's not asking or noticing a difference outside of people just being different and 2) She lives in an ASD home (at least 75%)....why would you explain to your kid that they are an American (or whatever else) outside of comparison of other cultures?!? You just are! On the other hand her 2 best friends have known since before she could talk (their parents explained it to them because they were confused why she didn't start talking). I talk about Autism in passing and sometimes in reference to the kids within their hearing, but it never seems to be something they pay attention to....maybe it's like being American (or whatever)....it's so apart of your concept of normal you just don't think about it... Sooooo.....I dunno.



CWA
Veteran
Veteran

User avatar

Joined: 13 Jun 2012
Age: 42
Gender: Female
Posts: 669

28 Oct 2015, 11:12 am

Tell him.

My daughter is 8, diagnosed right before she turned 5. We have never hidden her diagnosis from her. We also include her in most of her IEP meetings. It's her life and ASD is a part of who she is. How the heck is awareness supposed to be raised regarding neurodiversity and ASD if people aren't out there "owning" it? What is accomplished by "hiding" her diagnosis from her? Is she ever going to NOT be autistic? Does it disappear in a puff of smoke on her 18th birthday?

My daughter owns it utterly. She loves who she is. She knows that she is just different, not less. Her brain is wired differently in such a way that for her math is super duper easy, but understanding social situations is hard. KNOWING that it is indeed harder for her, and that there is a reason it's harder to make friends is *validating* and it helps her to understand that while she doesn't need to study her math very hard, she does need to study people and she does need to attend her social skills group in the way that other kids need to learn to read. She was hyperlexic and didn't need to do that.

Every kid in her entire school knows that she has autism. All of them. Every kid in her class is educated about autism. She does QnA sessions for the school during autism awareness month. Shes also done some for several girl scout troops. There are just too many autistic children to treat a diagnosis like a dirty little secret. It's not and no one should think it should be.

And you know what? No one picks on her. No one bullys her. Everyone is nice to her. On the rare occasion a kid has tried to bully her (And she recognizes that she's being picked on which she doesn't always get it), she doesn't take their crap. She stands up for herself or better yet, other kids intercede because they know that she is different and they realize it's not right to pick on someone for being different. She has friends and she is getting invited to birthday parties now that she's stopped having (frequent) meltdowns.

Now I'm not saying that every kid needs to be an advocate, but I really, truly believe that it does more harm than good to withhold this information. If she didn't know it would be way harder to get her to work on her weak points because she has a hard time perceiving her weak points herself. Not only that but when we eventually told her I'm pretty sure she would feel quite lied to.



Aimee529
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

Joined: 16 Oct 2015
Age: 37
Posts: 73
Location: Florida

28 Oct 2015, 9:31 pm

CWA wrote:
Tell him.
What is accomplished by "hiding" her diagnosis from her? Is she ever going to NOT be autistic?


In some cases (probably many these days), children are diagnosed before they can communicate or even understand what Autism is (not to mention the difficulty for some children in understanding the very idea that someone else could think differently from them. So...it may not always be "hiding" it but perhaps deciding whether or not to push the issue or just wait until you get more prompting....and when you get to that point how do you approach it. In some ways it's like Santa Claus. We did Christmas with the kids when they were little, but their language (and then comprehension) was so limited that it was a while before they even grasped the concept. We kept doing Christmas or talking about Christmas, but they weren't aware of what was going on. Now my son is finally beginning to get the idea of Santa Claus so we are able to talk about it some, but again figuring out how to answer each child's questions given their unique perspective has always been a challenge for parents, NT or ASD. :-)



CWA
Veteran
Veteran

User avatar

Joined: 13 Jun 2012
Age: 42
Gender: Female
Posts: 669

29 Oct 2015, 8:16 am

Aimee529 wrote:
CWA wrote:
Tell him.
What is accomplished by "hiding" her diagnosis from her? Is she ever going to NOT be autistic?


In some cases (probably many these days), children are diagnosed before they can communicate or even understand what Autism is (not to mention the difficulty for some children in understanding the very idea that someone else could think differently from them. So...it may not always be "hiding" it but perhaps deciding whether or not to push the issue or just wait until you get more prompting....and when you get to that point how do you approach it. In some ways it's like Santa Claus. We did Christmas with the kids when they were little, but their language (and then comprehension) was so limited that it was a while before they even grasped the concept. We kept doing Christmas or talking about Christmas, but they weren't aware of what was going on. Now my son is finally beginning to get the idea of Santa Claus so we are able to talk about it some, but again figuring out how to answer each child's questions given their unique perspective has always been a challenge for parents, NT or ASD. :-)



True, I guess, but irrelevant to this discussion since the child is older and wondering whats up. They are a long way past where I would have told my child. We told my oldest right away (At age 5) because honestly, she is very intelligent and at the time of diagnosis already had figured out Santa was crap. She didn't *quite* get it, but does now. My youngest is also diagnosed and she is 5. I could tell her, but it wouldn't matter. It would quite literally go in one ear and out the other. In fact I'm pretty sure we've told her, but she doesn't *know* because she doesn't retain it because it's ameaningless concept to her right now. I will make sure she knows when shes capable of retaining the information for longer than 5 seconds and have some idea that it might mean something.

Nothing to disagree with what you said I guess, I agree it is pointless to tell a kid before they can even understand what you are saying, but from the OP it sounds like they are past that point.



looniverse
Sea Gull
Sea Gull

Joined: 19 Oct 2015
Age: 41
Posts: 233
Location: Saint Paul

29 Oct 2015, 9:04 am

I was diagnosed at age 36.

I am grateful I didn't have a label as child. I think it would have been too tempting, especially as a child, to use a diagnosis as an excuse for behavior.

I also don't believe that the world should have to cater to me. It doesn't mean I have to change who I am to navigate the world. It does mean that I have to face the world on its own terms, reality, rather than have a protective cocoon forever.

I am glad I never had a label, or diagnosis to hide behind. With hindsight, I would have felt deprived of opportunity on some level if someone told me hey you have this diagnosis, there are just some things you will always struggle with or never be good at.

It's our goals and challenges that really give meaning to our lives, more so than even our achievements. For me, a label would have taken away a lot of my motivation, and maybe even some of my hope.



Aimee529
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

Joined: 16 Oct 2015
Age: 37
Posts: 73
Location: Florida

29 Oct 2015, 11:27 am

CWA wrote:
Aimee529 wrote:
CWA wrote:
Tell him.
What is accomplished by "hiding" her diagnosis from her? Is she ever going to NOT be autistic?


In some cases (probably many these days), children are diagnosed before they can communicate or even understand what Autism is (not to mention the difficulty for some children in understanding the very idea that someone else could think differently from them.


True, I guess, but irrelevant to this discussion since the child is older and wondering whats up. They are a long way past where I would have told my child. We told my oldest right away (At age 5) because honestly, she is very intelligent and at the time of diagnosis already had figured out Santa was crap. She didn't *quite* get it, but does now. My youngest is also diagnosed and she is 5. I could tell her, but it wouldn't matter. It would quite literally go in one ear and out the other. In fact I'm pretty sure we've told her, but she doesn't *know* because she doesn't retain it because it's ameaningless concept to her right now. I will make sure she knows when shes capable of retaining the information for longer than 5 seconds and have some idea that it might mean something.

Nothing to disagree with what you said I guess, I agree it is pointless to tell a kid before they can even understand what you are saying, but from the OP it sounds like they are past that point.


I don't disagree that each child has a right to know about themselves either....and yes, when they start asking questions that would seem like a great opportunity to explain it.....but it might be more intimidating/stressful for some parents than others. I feel like being on the spectrum myself has been of enormous advantage to me because a lot of times I make decisions with regards to ASD parenting based solely on instinct. I often have NT parents of a child with ASD stop me and say "Wait...why did you do that?" because it never would have occurred to them! Just like some things aren't as obvious to us with ASD, I think some things (like this perhaps) might not be as obvious to NT parents trying to raise an ASD kiddo.



babybird
Veteran
Veteran

User avatar

Joined: 11 Nov 2011
Gender: Female
Posts: 36,894
Location: Top deck of the funny bus....blowing bubbles

29 Oct 2015, 11:31 am

Someone suggested books. I think that is a good idea.

Also the suggestion of helping him see other people who have it so he has people who he can relate himself to.

I'm not sure when the best time to tell him would be but perhaps sooner rather than later.

All the best


_________________
I can't say that I have ever shat on my own doorstep.

Woof Woof! Cheep Cheep!


SocOfAutism
Veteran
Veteran

Joined: 2 Mar 2015
Gender: Female
Posts: 2,573

29 Oct 2015, 1:34 pm

I don't study autistic kids, but I have a much younger autistic younger brother who was never told and my husband and some of my in-laws are autistic with late diagnoses. And I'm a sociologist who studies autistic adults in the workplace.

I can't professionally talk about this, just casually, because I haven't done any "official" studying on this subject. But I've casually noticed that people who were told as kids seem to have better self esteem than people who had to figure it out and get a diagnosis as middle-aged or older people. High school seems to be like Thunderdome for autistic kids. If they don't know they're autistic, it's like taking away any possible defenses.

Some autistic behaviors look weird but are healthy and necessary for coping with stress and depression. If you know you're autistic and what you're doing is normal for an autistic person, you can give yourself permission to take care of yourself better.

However...people who tough it out might be doing better with their careers and social lives. Forcing yourself to "appear normal" is a powerful skill for anyone. Aspies who can do it, AND find a way to continue taking care of themselves are pretty much unstoppable.

My CASUAL, observer opinion is that your son can take care of himself and build his self esteem better if he knows. But if he can learn how to roll with the punches and function in a very uncomfortable neurotypical world, that will be better for him in the long run.



Aimee529
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

Joined: 16 Oct 2015
Age: 37
Posts: 73
Location: Florida

29 Oct 2015, 5:23 pm

SocOfAutism wrote:
But I've casually noticed that people who were told as kids seem to have better self esteem than people who had to figure it out and get a diagnosis as middle-aged or older people. High school seems to be like Thunderdome for autistic kids. If they don't know they're autistic, it's like taking away any possible defenses.

Some autistic behaviors look weird but are healthy and necessary for coping with stress and depression. If you know you're autistic and what you're doing is normal for an autistic person, you can give yourself permission to take care of yourself better.

However...people who tough it out might be doing better with their careers and social lives. Forcing yourself to "appear normal" is a powerful skill for anyone. Aspies who can do it, AND find a way to continue taking care of themselves are pretty much unstoppable.

I like your description of high school as being like Thunderdome! (although that probably starts by at least junior high if not earlier these days) On the forcing yourself to appear normal part...that's been mentioned a couple times, and there was a rather lengthy thread a while back about high functioning Aspies that are really successful at "faking it till you make it" and then crash sometime (typically sometime middle adulthood). I never really thought about it too much until that thread, but the more I think about it the more I think that's what happened to me... My health torpedoed about 6 years ago and while it is not likely all stress related....the stress of always having to be someone you are not and the extra effort that takes has definitely done a number on my health. But yes, good observations.



Meeko_09
Tufted Titmouse
Tufted Titmouse

Joined: 6 Oct 2015
Posts: 25

30 Oct 2015, 1:57 am

Not knowing turned into self-hatred for me. I'm lucky to be alive.

You hold a powerful key to unlocking happiness.

Don't take that lightly.