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

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autism333
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21 Sep 2015, 1:41 pm

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

Dr. B.J. Freeman, Ph.D. also feels like it is time to tell him about his autism. Dr. Freeman is Professor Emerita of Medical Psychology at UCLA School of Medicine and is Founder and past Director of the UCLA Autism Evaluation Clinic, and co-founder of UCLA’s Early Childhood Partial Hospitalization Program. She is considered an international authority in the diagnosis, psychological assessment and treatment of children and adults with autism spectrum disorders. I have a lot of respect for her, but I don't agree with her on this.

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?



NowhereWoman
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21 Sep 2015, 1:52 pm

Your son was DXd with autism and now has no DX at all? Really? Classic/Kanner autism? Was his DX now removed? Just curious.

How long did you work with your son? Surely it was a period of years and he has some memory of therapies or whatever it was you and your husband were doing...? Hasn't he ever asked?

I think he's old enough to know that he had Set of Issues X as a small child which led you to your current involvement with ASD work. As to whether I'd want to know in his situation, though, I don't know. If I continued to have issues associated with ASD (without knowing they were ASD) I am pretty sure I'd want to know what was up, but I'm not clear on whether your son still is on the spectrum, is not on the spectrum, has any associated issues or what. My feeling on this is that it's a family matter and a personal decision, but maybe someone else can chime in with something more concrete.



alex
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21 Sep 2015, 1:56 pm

autism333 wrote:
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?

I think it is good to know. If you're worried about negative stigma, why don't you give him a lot of examples of successful autistic people who have made meaningful contributions to society? A lot of us are proud of being autistic.


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TheNameless
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21 Sep 2015, 2:02 pm

I don't understand how your son no long has autism? Surely he was misdiagnosed in this case.



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21 Sep 2015, 2:03 pm

If he is still having trouble with autism related issues, then yes, I would tell him to put his mind at ease. But, as you stated, he does not have the diagnosis anymore (or rather, the symptoms), so I believe telling him will have a negative effect on him now. I believe he is too young. I think you should wait until he is a teenager when he has more concretely formed his personality so that when you do tell him he will not be totally devastated and confused about who he is.
But, that's just my opinion.



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21 Sep 2015, 2:03 pm

As someone who found out they were autistic when they were 44 I would say tell him now. I think it would have been an immense relief to hear that diagnosis. It answered a lot of questions for me. Although, as a parent of a 4 year old child with AS myself I totally understand your hesitation. We are still debating at what age to let our daughter know.

I would consult with your child's doctors, therapists, trusted family members, your ex-husband, and friends and then make a decision.



NowhereWoman
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21 Sep 2015, 2:09 pm

The one thing I'd worry about would be...what if he isn't "no longer autistic" but simply learned how to mask his autism very, very well? I can say from experience that it can be done, in some cases. In that case, he might be thinking "I'm weird...there's something wrong with me" but be afraid to ask, and IMO that could be much more damaging than telling him at this early stage about his past history. Growing up thinking there's "just something wrong with" you and hiding the "wrong" stuff with all your might can really mess with the emotions and be scarring. You literally think you're the only one on earth who's weird, and that you'd darned well better hide it because if everyone found out how nutty you were, they might throw you in an asylum or something...It's a pretty miserable existence, IF this is the case.

But again, that's 100% conjecture on my part, based on my own experience and may not describe this boy at all.

The reason I bring all this up is just...I don't know. I'd wonder about this amazing turnaround, people don't generally (AFAIK) suddenly become un-autistic. Unless, as someone stated above me, it was a mis-DX.

If I'm wrong about that, though, somebody please correct me.



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21 Sep 2015, 2:13 pm

If the doctor thinks you should tell him he's autistic, you probably are just not noticing the signs that are still there (even if you personally can't see signs of autism, it doesn't change the fact that he's autistic).


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NowhereWoman
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21 Sep 2015, 2:14 pm

Boo Radley wrote:

I would consult with your child's doctors, therapists, trusted family members, your ex-husband, and friends and then make a decision.



Probably pretty solid advice!

It's going to be hard for any of us here to give "the" correct advice, not knowing the OP or her son.



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21 Sep 2015, 2:25 pm

I learned about my autism just recently and it really explains so much for me. Pieces of the puzzle keep on falling into place on a daily basis.
I think I could have been so much happier if I would have understood this about myself earlier. Just being labelled won't do anyone any good, but understanding why you experience the world the way you do, that's worth so much.


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Lukeda420
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21 Sep 2015, 2:40 pm

I would say tell him. If he was diagnosed as autistic then regardless of whether or not he shows outward symptoms he probably still experiences the world differently than his NT peers. So having knowledge of his diagnosis could give him a better perspective with socializing as he gets older. I would also say that in this case based on what you described it might be good to stress to him that being autistic is just a difference and not necessarily a disorder.

On top of all that, it's his life and he is going to be autistic whether you tell him or not. So personally I feel it is wrong to keep this knowledge from him. I think the benefits of knowing why you are the way you are will greatly out way any detriments.



Fraljmir
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21 Sep 2015, 2:46 pm

I'm currently in the process of getting a diagnosis for Aspergers at 19 years old (a few days from 20), so I may or may not have it at this stage, but in my personal opinion there are positives and negatives to both; I do feel like the positives of knowing far outweigh the positives of not knowing though. During high school, I never fit in at all. I was bullied (which is very common for people on the spectrum), I had no friends for many years and as I said, simply did not fit in and I had no idea why. This spiraled into depression and anxiety which I still deal with today. Had I known at that point (if I do have it, that is), I would have been able to receive help and support from my school, I might have found similar people to connect with as well. Two of my good friends now are on the autism spectrum, so it's clear to me that I get along better with people on the spectrum. Also, had I found out that my parents had known for my entire life that I had been on the autism spectrum and never told me, I would feel betrayed and like they were trying to control my life and hide an important part of my identity. I would want to know from the first moment I was able to understand what they were telling me.

The positives for not telling him? Well, there's a chance he may make an extra effort to try to "fit in", as he won't be aware of his neurological difference, and learn to act NT (neurotypical) in order to not stand out. For me, this started becoming much more noticeable in about Year 10. I'd always known that the way I socialised and talked was vastly different to everyone else, so I began to build scripts, things like "Good thanks, yourself?" or "Hey, how's it going?" when someone asks me how I'm doing or says hello (I use these two lines 100% of the time, so if someone says something else like "Hey, how was your weekend?" I get confused/caught off guard because I don't have a pre-planned response. So he may learn to "fit in", and he probably already has to a degree based on what you've said, but this would probably happen even if he did know that he was on the autism spectrum, it just might not be as high of a priority because he knows there's actually a reason for his differences, which is actually a good thing- because fitting in is stressful and draining.

All in all, it should be a balancing act in many aspects of your life, and balancing is difficult if you don't know important parts of your identity. For this reason, I think you should tell him. He'll have more support, he might find a group of people to connect with (which might 'not' happen if he doesn't know, as was my case), and he'll know there's a reason for his differences, which means less stress and mental drainage from forcing himself to fit in with society. Remember, the differences are not bad by any means, in many ways they're positive. Let him embrace those differences and thrive from them.



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21 Sep 2015, 3:08 pm

autism333 wrote:
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?


I hate to break it to you, but he probably already knows he's different. He's just trying to hide the Autistic traits that were trained out of him at a younger age.

autism333 wrote:
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?


As someone who went through 30 years of thinking I was different but not being able to explain why, I wish I had been diagnosed earlier in my life. It would have been nice to prevent way too many years of anxiety and depression due to forcing myself into a NT mask.

Now that I know, it's a relief to finally be myself.


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MjrMajorMajor
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21 Sep 2015, 3:10 pm

I believe he should be informed also. There's a good chance he already knows he is different. Cast it in a positive light ("different isn't wrong"), and it may help him he he has issues as he grows older. He can get support as he enters puberty or young adulthood.

I wasn't told of my diagnosis, but it ended up adding confusion and guilt when I did struggle through my teens.



adoylelb90815
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21 Sep 2015, 3:54 pm

ASPickle wrote:
autism333 wrote:
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?


I hate to break it to you, but he probably already knows he's different. He's just trying to hide the Autistic traits that were trained out of him at a younger age.

autism333 wrote:
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?


As someone who went through 30 years of thinking I was different but not being able to explain why, I wish I had been diagnosed earlier in my life. It would have been nice to prevent way too many years of anxiety and depression due to forcing myself into a NT mask.

Now that I know, it's a relief to finally be myself.


That's also how I feel about it, but I wasn't diagnosed until I was nearly 30, so until then, I could tell I was different, but had no way of understanding why I was that way, so I struggled with anxiety and depression. In my case, it was because only low functioning males got diagnosed, and Asperger's wasn't known about until I was an adult. If I had been able to be diagnosed when a child, I would have liked to be told about it.