" In a box not a bottle" Asperger's revealed

[abitbroken]

I read this discussion and meant to comment a few days ago, but I have had limited internet - so I can delete it if you feel it is out of place here - but as someone on the autism spectrum, I have conflicted feelings when someone says "I wouldn't put a child through that" in regards to choosing not to have a child for fear they will be autistic. It is like the image, to me, of talking about the elderly person in the room or the ill child in the room as if they are not there. Compared to having a physically visible disability, where people would not say those things in front of them, its like being the spy in the room on things you are not supposed to hear. In fact, since they suspected I was on the spectrum, my parents have treated me less as an individual and more explaining my choices "because of autism" instead of personality. They saw me as unique, intelligent and having in some ways, more guts than my siblings and someone who is more successful taking the less charted path before. In some ways, they are more patient with me and don't say "you know, you really don't care about people" but the truth is I DO care deeply. We lock horns less, but something was also taken away from me. In some ways they feel better about themselves and "need' me to be autistic.

 

It saddens me, really. My life is valuable. I add things to the lives of others. I have a boyfriend/future husband who loves me and I him. He treats me as me. Granted, I am not as social as other people. I have become very self aware of what makes me comfortable and happy - if that means I need to gear up mentally for a longer period of time about upcoming events - well, heck - whatever. My boyfriend knows that my brain just whirls around about 34 things at once and therefore sometimes I need the reminder that I forgot to put that bowl or cup away that I set to put away before I got distracted and such - but he feels that is such a minor thing, is a human thing and not part of any disease and he rather have someone who comes up with interesting perspectives on things and is not like all the other girls.

 

Anyway - rant over. I don't know what your son feels about being diagnosed in regards to how he views his personality and identity and you may not find out til later. Maybe he doesn't think about it much, but I hope he knows that there is a lot more to him than a diagnosis.

 

But bottom line (so i guess rant not over), not all autistic people feel that our parents "did this to us" and are glad that they had us. I don't have many nieces/nephews but they are all developing on the charts with nothing to suggest that they are autistic or have any physical issues outside the norm either. But if they were diagnosed with autism. it would not be the end of the world.

[Seraphim]

I read this discussion and meant to comment a few days ago, but I have had limited internet - so I can delete it if you feel it is out of place here - but as someone on the autism spectrum, I have conflicted feelings when someone says "I wouldn't put a child through that" in regards to choosing not to have a child for fear they will be autistic. It is like the image, to me, of talking about the elderly person in the room or the ill child in the room as if they are not there. Compared to having a physically visible disability, where people would not say those things in front of them, its like being the spy in the room on things you are not supposed to hear. In fact, since they suspected I was on the spectrum, my parents have treated me less as an individual and more explaining my choices "because of autism" instead of personality. They saw me as unique, intelligent and having in some ways, more guts than my siblings and someone who is more successful taking the less charted path before. In some ways, they are more patient with me and don't say "you know, you really don't care about people" but the truth is I DO care deeply. We lock horns less, but something was also taken away from me. In some ways they feel better about themselves and "need' me to be autistic.

 

It saddens me, really. My life is valuable. I add things to the lives of others. I have a boyfriend/future husband who loves me and I him. He treats me as me. Granted, I am not as social as other people. I have become very self aware of what makes me comfortable and happy - if that means I need to gear up mentally for a longer period of time about upcoming events - well, heck - whatever. My boyfriend knows that my brain just whirls around about 34 things at once and therefore sometimes I need the reminder that I forgot to put that bowl or cup away that I set to put away before I got distracted and such - but he feels that is such a minor thing, is a human thing and not part of any disease and he rather have someone who comes up with interesting perspectives on things and is not like all the other girls.

 

Anyway - rant over. I don't know what your son feels about being diagnosed in regards to how he views his personality and identity and you may not find out til later. Maybe he doesn't think about it much, but I hope he knows that there is a lot more to him than a diagnosis.

 

But bottom line (so i guess rant not over), not all autistic people feel that our parents "did this to us" and are glad that they had us. I don't have many nieces/nephews but they are all developing on the charts with nothing to suggest that they are autistic or have any physical issues outside the norm either. But if they were diagnosed with autism. it would not be the end of the world.

 

Thank you. Exactly. My son is not just " autism". He is HIM. And he is wonderful with so many talents and has so much potential. My son is very glad he was born and in no way does he see his autism as limiting. He totally accepts himself as he is and so do we. I agree a diagnosis of autism is not the end of the world and I would welcome autistic grandchild without reservation.

 

Thank you.

[Seraphim]

And the psychologist who diagnosed him noted that he has good self-esteem ,a good sense, positive sense of who he is and the goals for his future. And that's rare in most teens. And because we've given him such a stable and accepting and supportive childhood it will make him very resilient.

[IAmFCA]

Good job, mom. You've been brave with your faith in him, starting as soon as he got here. I respect that a great deal.

[Seraphim]

Good job, mom. You've been brave with your faith in him, starting as soon as he got here. I respect that a great deal.

 

I do have faith in him. And I feel it was my job to give him a sense of self-esteem and faith in himself. That way he will have the courage to face the world and keep on going. He has self-love and self confidence. And that's the most important thing I could've ever given him.

 

Thank you

[Seraphim]

I know how it feels to be mortally wounded by lack of self-worth. I would've rather cut off my own limbs then do that to him. A sense of self-worth is the most important thing a parent can give .

[IAmFCA]

I know how it feels to be mortally wounded by lack of self-worth. I would've rather cut off my own limbs then do that to him. A sense of self-worth is the most important thing a parent can give .

 

I am passionate on this point as well and my children reflect my efforts, like yours. I know I can't take credit. I also know there are many times when my choices were impactful. Had I followed the crowd, they would have been diminished. Nothing makes me happier than to see them feel their fullness. Nothing. I am grateful for you, because I too know the value of your gift.

 

... And the many influences that encourage you not to give it as fully as you have.

[Seraphim]

I am passionate on this point as well and my children reflect my efforts, like yours. I know I can't take credit. I also know there are many times when my choices were impactful. Had I followed the crowd, they would have been diminished. Nothing makes me happier than to see them feel their fullness. Nothing. I am grateful for you, because I too know the value of your gift.

 

... And the many influences that encourage you not to give it as fully as you have.

 

Thank you. Thank you for believing in your kids.

[IAmFCA]

Thank you. Thank you for believing in your kids.

 

Maybe we don't know that we are contagious.

 

Its a nice thought, anyway.

[Seraphim]

So my mom calls me about this new experimental cure for autism. *** vast amounts of eyebrolling night on my part**** she says I know this makes you really pissy but just hear me out.

 

Who says my son wants to be cured ? Why don't you ask him??!!

 

People want to " cure" homosexuality and people go insane as they should!! That's disgusting to try and do to somebody . But you try and cure autism and then you are a hero? They are not sick! My son does not want to be cured! He is happy!

[annie24]

Another point: experimenting on children is NOT cool and is probably illegal. It's really disgusting to have parents do x, y, z to their kids just because they can, outside of a very stringently controlled clinical trial.

[Seraphim]

Another point: experimenting on children is NOT cool and is probably illegal. It's really disgusting to have parents do x, y, z to their kids just because they can, outside of a very stringently controlled clinical trial.

 

Yeah ,the fellow who decided to have this experimental brain stimulation treatment was in his 40s. And apparently now he is " cured". * eye roll*

 

But I asked my son three minutes ago if he could choose to be neurotypical or autistic what would he choose. And he said 100% he would choose to be autistic .

[Seraphim]

[video=youtube_share;229Xb50_o8M] ]

[Seraphim]

My son is pretty affected by executive dysfunction. His working memory is actually 1st percentile or less . It means he is severely affected.

[Seraphim]

He also has problems with transitioning from one task to another.

[Seraphim]

In typical Asperger's fashion what does my son write on his self report for ODSP? My condition just not stop me from having my personal needs met. Uh huh, ok. Luckily the doctor wrote on the form, has limited understanding of one's own disability.

 

My mom says this is your fault, you taught him since he was a tiny little guy that he's perfect as he is. My fault that I gave him self-esteem? Great. I needed that.

[Cheetarah]

I had this huge post this morning that I lost because I wasn't stayed as logged in on this pc and it only saved a little in the restore.

 

But I just went to visit the general academic preschool and there is no way in hell I can picture my son it. I took him with me and in those 20 minutes, he managed to wrangle out of the woman's hand and run down 3 hallways before I got to him. When he got into the preschool and I listened to the other children, I realized how clear their speech is. He tried to snatch some kid's milk, he threw toys in the garbage, he rolled around on the floor and seemed in another world. He tried to dart for the door.

 

If he's eligible for special ed(which 99.9% sure he is, but I won't know that formally for 2 weeks ), he wouldn't be able to go there anyhow as there is a wait list, so he'd have to be placed elsewhere until a spot opened. Regardless - Even if a spot were open, I cannot see it. I , towish that I could but even with supports in place, I can't. Too many children and too much that overloaded him.

 

I'm not exactly sure what this neurodiversity movement is about, but if it means not getting therapies I don't understand that at all. We get therapies/treatment for our anxiety to make life more comfortable. Why wouldn't we do that for people that have ASD? At home, my son is welcome to ice galore to soothe himself but that's just not plausible 'out there'. The things he does to soothe himself here don't work too well 'out there'. So I am trying everything possible to find a way to blend him in while still finding ways for him to center himself. Does that make me a conformist? Because it seems the neurodiversity community thinks so.

 

I guess my point was - We all have challenges and hurdles that we need help with to get from A to B. I don't think making someone aware of that erodes their esteem. I think diplomacy is lost on your mom per usual but I think I get what she meant. Not that he shouldn't have esteem, of course he should have a strong sense of self.

[Seraphim]

The neurodiversity movement is about them being themselves without being forced to look or react neurotypical . That they shouldn't have to "script " or " pass ".

 

But what he told me was ," mom you've told me I should never lie and this is how I feel about myself so why should I say something different." And I can see his point.

 

But yeah, my mom is more force him to be neurotypical kind of deal. Where as R never had any treatment so he's just who he is. And I've always told him to be proud of who and how he is.

 

 

My mom is more force people to do what they're supposed to do ,you're probably far more moderate than my mom and I'm far other end of the scale I would say. But I probably have more opportunity to be on my part of the scale because he's older and more passedvthe phase of extreme activeness and sensory seeking. R used to be just like M in that way. And back then I was far more interested in treatments for him. But his rights and wishes now as an 18-year-old have to be respected as well. Gone are my days of making sole decisions for him.

[Seraphim]

[video=youtube_share;mBsmXKuCCYk]

[Cheetarah]

The world isn't going to catch up to that mindset for a long, long time. I've been thinking a lot about my post and your post(I didn't watch that video) and doing reading about the whole neurodiversity thing. I'm still confused if they believe intervention/therapy is good or bad. It seems on one hand this camp wants to embrace ASD and say there is nothing wrong, just different(which I do agree with, it's a difference) but yet wants financial supports in place(like disability). This doesn't make much sense to me. People with physical disabilities are accommodated with things like walking assistance, wheelchairs, PAs - Stuff to make life easier and more comfortable, make them more mobile, give them opportunities to do things they wouldn't otherwise be able to do. And most of them are on disability.

 

I think back to my ex boyfriend that lost his vision, and how he went to the lighthouse to learn independent living skills, got a PA for grocery shopping, etc. Relearning things that people who are not blind do. Using a walking cane to get around instead of having someone leading him everywhere. Learning how to cook basic meals instead of depending on someone else to do it. Things like speech therapy, occupational and physical help people with ASD learn independent living skills and how to focus, or self-regulate, etc etc.

 

These of course took money, resources, government aide. So...Again - I don't get it. I am open and willing to read things that explain this better, because it doesn't make any sense to me. Don't call it a disability, yet collect disability insurance? What is that? Parents aren't allowed to say life is hard raising an ASD child, no harder than parenting a neurotypical child. That's not true. Because of the differences. I need sleep. My son doesn't need much. He's just...wired not to need much. He still sleeps less than the average child his age, although more than before we started the melatonin. I need to go grocery shopping. I can't take him with me. I have tried everything on my own and within minutes, it is meltdown city. I have to go grocery shopping when someone can watch him or if someone can do the shopping for me. I could make a list but you get my point.

 

This is just what I have read, that it seems really big within the neurodiversity community - You aren't supposed to say it is hard. BUT IT IS HARD. I'm sorry if that is hurtful but trying to wrap our heads around the difference in the way I process and the way he does is difficult. It's like not saying that being with someone who has anxiety/depression is hard. It is hard. Why is that hurtful? It is difficult.

 

I don't understand. Again, I am willing to revisit and reconsider this but perhaps you would send some links my way? Something that better explains(in text, if possible)? Or even your own word?

[Seraphim]

What Amethyst is saying is yes ,it's a disability and yes ,there needs to be accommodations. I would say she's pretty moderate in her neurodiversity stance. She's nowhere near as hard line as some. Basically her stance is that autism is not a tragedy and it's not a burden. It requires love and understanding and support and celebration.

 

I know it will be a long time before society accepts this if it ever does.

[Seraphim]

Her speech was beautiful ,really. Yet also very difficult because my son faced some of the things that she did in her childhood. Yet she's willing to forgive and try and teach and so is he.

[itsallgrand]

It breaks my heart people still experience that kind of stigma, and to feel so alone.

 

She said something about "there was no one there to let me know that having a disability was not shameful". Bam. Right there, that.

 

What is she is advocating is acceptance. I can get behind that.

 

From there, what course an individual takes, is a choice. But acceptance? Seems like the right starting point for getting anywhere.

 

The fact your son accepts himself as he is, and you have helped him to learn that since he was young, IMO gives him a huge leg up. Shame helps no one. It's crippling.

[Seraphim]

It breaks my heart people still experience that kind of stigma, and to feel so alone.

 

She said something about "there was no one there to let me know that having a disability was not shameful". Bam. Right there, that.

 

What is she is advocating is acceptance. I can get behind that.

 

From there, what course an individual takes, is a choice. But acceptance? Seems like the right starting point for getting anywhere.

 

The fact your son accepts himself as he is, and you have helped him to learn that since he was young, IMO gives him a huge leg up. Shame helps no one. It's crippling.

 

Yes. It is about acceptance . And compassion and love.

 

You're right shame helps no one.

[Seraphim]

I think the neurodiversity movement is important because it's by autistic people for autistic people ,it is their own voice. It is important for us to hear what they have to say and what they want for themselves. Everyone wants to be heard and validated. Everyone wants to feel valued. Everyone wants a say in their own life.

 

That's valid .