What if you'd gotten the support you needed as a child?

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beneficii
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05 Feb 2014, 6:28 pm

If you had been diagnosed and treated as a young child, you may have ended up like me, where I sought to cut off all support and put autism behind me, only to run into a wall when you actually try to accomplish any real goals in your life.


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Halfmadgenius
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05 Feb 2014, 6:31 pm

That's hard. I might have to think for a while but I believe I might have been able to get help filling out papers for college and financial aid and have gone to school before now.

As for things actually turned out, well it was obvious I needed help. But no one knew about Asperger's back then so they had no way of treating the whole problem, they just addressed the problems I had individually.

Add to that dad was a Marine, and some schools were better than others. And I was often placed in classes way below my level because of my behavioral issues. I learned a lot about compassion in those classes but every thing else I had to teach myself after mom taught me to read.

Add to that a father who resented me from the day I was born a girl and hated me for my disabilities. He stopped beating us when I was 9 and told him I'd call the cops (he knew I wasn't bluffing) but continued to emotionally and mentally abuse us and I didn't have the verbal skills or even the awareness of what was really going on to communicate it to any of my therapists. I asked to be placed in foster care a few times but they wouldn't take me seriously and I couldn't marshal my thoughts to make my case.

Things may have been so different if only instead of putting me on spot to explain myself verbally I'd been given pen and paper and sent to time out to think about it. When put on the spot I'd look down and say "I don't know." Because I honestly didn't at any given moment, but give me time to think and a pen and I can give you a three page essay on what I was thinking.



Ashariel
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05 Feb 2014, 6:40 pm

I appreciate hearing everyone's answers! :D

I'm not sure if I understand the argument that it's pointless to ask 'what if', or try to learn from one's past... I guess it's one of those things, it's probably true for some people, but different for others!

In my own case, I definitely see my life as a series of cataclysmic life choices, all of which were doomed to fail. And understanding that in retrospect helps me to not repeat my mistakes, and to make better decisions in the future. So this exercise has absolutely been useful to me, and has helped me to understand that it wasn't my fault that my entire life has been a massive train wreck – but that 'train wreck' was the only possible outcome, given the woefully misinformed choices I was making all along. Choices that would have been right for an NT, but could never work for a person with my specific challenges.

But I'm grateful to finally understand my issues, and know my limitations. I feel like I've spent my entire life being told that if I flap my arms hard enough, I'll eventually fly... And I finally realize that's never going to work, because my anatomy is simply not built that way. So I can spend my time and energy in more productive ways, and maybe finally succeed at something, instead of constantly failing.

At the very least, I'm happy that the confusing train-wreck phase of my life is behind me, and that I'm able to proceed from here at a pace and level of challenge that I can actually handle!



Halfmadgenius
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05 Feb 2014, 6:41 pm

wozeree wrote:
How do you quantify enough support? You'd still be Autistic.
Hehe maybe we'd all be Temple Grandins.


Dr. Madgenius, hmmmmmm...

I like it!



beneficii
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05 Feb 2014, 10:32 pm

Quote:
But I'm grateful to finally understand my issues, and know my limitations. I feel like I've spent my entire life being told that if I flap my arms hard enough, I'll eventually fly... And I finally realize that's never going to work, because my anatomy is simply not built that way. So I can spend my time and energy in more productive ways, and maybe finally succeed at something, instead of constantly failing.


Heck, even with early diagnosis (PDD-NOS at 5/6) and support, I didn't have any decent understanding at all. I hated being in special ed, being made to take medications, and always being treated as different from the others. Even with the support, I always thought that if I just changed this one thing or another that I'd finally be able to overcome my problems. This seemed to happen in high school and I completely cut off all support. I then ran into a wall once I actually tried to accomplish a major life goal.


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Ashariel
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05 Feb 2014, 11:37 pm

beneficii wrote:
Heck, even with early diagnosis (PDD-NOS at 5/6) and support, I didn't have any decent understanding at all. I hated being in special ed, being made to take medications, and always being treated as different from the others.

I guess I see that as evidence that you didn't get the support you needed. And that you would have benefited from a school environment that helped you to fit into mainstream society, in a way that made you feel more accepted and less ostracized.

I'm not saying the existing system is "the support we need". But I think asking ourselves what might have been more helpful could lead to a better understanding of our true capabilities as individuals (as opposed to what we were led to believe about ourselves as children) – and our collective experiences might help educators to avoid making the same mistakes with future generations.



DevilKisses
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05 Feb 2014, 11:40 pm

I was diagnosed early and I don't think I'm doing well at all. All the "support" I got just made me feel subhuman. I'm not even sure if I got diagnosed correctly. I hope I was misdiagnosed. If I were misdiagnosed I would be able to have hope.


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SplinterStar
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06 Feb 2014, 12:17 am

If I had received support as a child for every thing I struggled with, I'd be an over privileged brat that expected the universe to wipe my bottom when ever I s**t myself. While it is true that I am some what broken and was bullied to the point of being beaten, I learned the world can suck hard. I learned what reality could be in a way that some adults don't even know. I learned to attack right back if bullies were on my tail. My bullies left me alone after I stood up to them and beat a guy until one of his teeth broke. They knew I wasn't going to take s**t anymore, just like I don't take s**t today. It's one thing to help your child out occasionally, but giving them this false world were everyone respects you just isn't true. The world is out to crush your soul into powder, and its up to you (not your family), to punch back and tell the world "Stop defining my actions! I'm not your ****** so stop treating me like one!"

I know I'm ranting a bit but the role of the government, care takers, and parents isn't to protect you from everything forever. After a point, you just have to find a niche or survival skill and take on the world by yourself. I am not terribly ambitious myself, but I no longer live with my parents, eat at least 3 vegetables or fruits every day, and brush my teeth at night. I feel being shown what the world is like formed me into a better person instead of being coddled. I can't imagine how needy I would sound if I assumed the world still had to wipe my ass whenever I crapped.

Alright I'm ready for the hate. *hides behind internet hate shield*



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06 Feb 2014, 12:24 am

I think that I might have been limited by others if I had been diagnosed as a child.

If I had been the autistic child who didn't speak, then the teachers might have held me back from learning at the high level and fast pace that I needed to develop my mind. Instead, I was the gifted child who didn't speak, so the teachers set up a special education plan for me to learn in my way.


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Ashariel
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06 Feb 2014, 12:55 am

SplinterStar wrote:
If I had received support as a child for every thing I struggled with, I'd be an over privileged brat

Another interesting point! It seems like if you add up everyone's feedback so far, there are drawbacks to any approach, especially the extremes. I'm an example of the danger of placing unreasonably high expectations on a child, and others have had the opposite experience, of being made to feel subhuman and limited in their potential. And I agree that there's a point where coddling a child too much does more harm than good.

It seems a middle-of-the-road approach might be best, so that kids are treated as 'mainstream' as possible, but receive the help they need behind the scenes.



Fortran77
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06 Feb 2014, 1:00 am

I'm 40 and was just diagnosed last year. I've actually been thinking about this a lot lately and it seems like a double edged sword. Sure, I could have used a clue of what was wrong. Looking back, I can clearly see how Asperger's affected me socially in high school, college and work (to an extent). However, not knowing any better, I just plowed through and made the best life for myself that I could. I'm thinking that an earlier diagnosis would have just held me back.

I have made a lot of mistakes in my marriage and with my kids that I regret and wish I could do over, but I can't. I can only make the best of things going forward.


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vickygleitz
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06 Feb 2014, 1:06 am

When I was young, if I had the knowledge, well, I don't know if I would have had the wisdom to apply it.

To the original OP; you are 42 years old! You probably have a good 2/3 of your adult life left.[or more] You are young and have plenty of time to fail and fail and fail and then succeed and then recreate your life again a number of times. 42 is the new "what do I want to do when I grow up."



beneficii
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06 Feb 2014, 2:48 am

Ashariel wrote:
beneficii wrote:
Heck, even with early diagnosis (PDD-NOS at 5/6) and support, I didn't have any decent understanding at all. I hated being in special ed, being made to take medications, and always being treated as different from the others.

I guess I see that as evidence that you didn't get the support you needed. And that you would have benefited from a school environment that helped you to fit into mainstream society, in a way that made you feel more accepted and less ostracized.

I'm not saying the existing system is "the support we need". But I think asking ourselves what might have been more helpful could lead to a better understanding of our true capabilities as individuals (as opposed to what we were led to believe about ourselves as children) – and our collective experiences might help educators to avoid making the same mistakes with future generations.


Good point. Now, in elementary school, there were repeated attempts to mainstream me, and it seemed I got a lot of support during those attempts, but they all failed.

Then in 8th grade, I move to another area and was thrown to the wolves--er, thrust into mainstream education, where not only did I not get any support, but it seemed that people were almost hostile when it came to my behaviors (some of which were admittedly not all that good). This culminated in a series of meltdowns/shutdowns that led to my expulsion from school and first psychiatric hospitalization, being placed in a special school for kids with mental problems, and severe psychosis the summer afterward, which led to residential treatment for 6 months and high doses of antipsychotic medication for a few years (with which I grew less and less compliant, but did not relapse thank God).

I managed to mainstream again in 10th grade, though, and I did better. I felt like people understood me better, but I also wanted to put everything behind me and start *anew*. I had dreams and ambitions and was not willing to let my past stop me.

Unfortunately, I may have snipped the support too much, as I ran into a wall in my mid- to late 20s.


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LupaLuna
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06 Feb 2014, 3:21 am

Fortran77 wrote:
I'm 40 and was just diagnosed last year. I've actually been thinking about this a lot lately and it seems like a double edged sword. Sure, I could have used a clue of what was wrong. Looking back, I can clearly see how Asperger's affected me socially in high school, college and work (to an extent). However, not knowing any better, I just plowed through and made the best life for myself that I could. I'm thinking that an earlier diagnosis would have just held me back.

I have made a lot of mistakes in my marriage and with my kids that I regret and wish I could do over, but I can't. I can only make the best of things going forward.


I'd have to agree on the doubled edged sword thing. As far as growing up goes. I am glad I didn't know because knowing how bad it is. I would've gotten depress and given up on life yet on the other hand. I believe I would've benefited immensely in school as school was a living nightmare for me and have been forever traumatized from the experience.

Once you learn that you have AS. It forever changes your perspective on how you see the world in a dramatic way.



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06 Feb 2014, 3:39 am

Ashariel wrote:
A lot of us were diagnosed later in life, and/or didn't receive adequate support and guidance as children. So we probably got into situations that were wrong for us, from the start. I definitely feel this way about my own life, and wonder if others feel the same? My life pretty much feels like a train wreck, and in my own case, I think it can be of benefit to try to imagine what my life right now could have been like, if I'd understood what I was dealing with, and had made better decisions.

If I'd been diagnosed and received support and guidance as a child:

• I wouldn't have been labeled 'gifted' and pushed past my limit, to the point of feeling hopeless and suicidal from the age of 7 on.

• I would have at least understood why I wasn't fitting in socially with the other kids at school, and wouldn't have blamed myself for my struggles.

• I would have learned to accept that it's okay to be introverted and different, and would developed better self-esteem instead of feeling like something was wrong with me.

• My parents and teachers would have understood that certain things were difficult for me, and I wouldn't have felt so hopeless and frustrated about my specific learning disabilities.

• I would have been more careful in choosing a career that I would be able to handle, instead of one that was ridiculously impossible, and required social and coping skills that I simply do not have.

• I would have realized that I'm bipolar as well as autistic, and learned to manage my symptoms and make lifestyle choices that help me to be stable and functional.

• I would have realized that being an exchange student overseas was more than I could handle, and I wouldn't have gotten into a situation where I was being sexually abused, and developed severe PTSD.

• I would have had assistance with doctors, so that when I got bitten by a tick, I wasn't afraid to get help (for fear of being called a hypochondriac), and I would have been treated in time, so that it didn't progress to an advanced stage and cause permanent disability.

• I would have realized that I'm asexual, and wouldn't have gotten into a marriage that was doomed to fail.

• I would have accepted the fact that my ideal lifestyle would be to live with my parents, help them with their rent, and work at a simple sort of office job that I would have been able to handle, without the added complications of Lyme disease, PTSD, and a general feeling of hopelessness due to a lifetime of failure.

I find it interesting to realize that in a perfect scenario, I really would have been able to manage a simple kind of job, and would be physically healthier today, and more confident of my abilities. And it helps me to realize what's truly standing in my way, of getting my train-wrecked life back on track.

I now understand that I'm autistic and bipolar, and that I need to take a very careful, unique, strategic approach to life, in order to succeed. I think I could get over my feelings of helplessness and despair, and really the only added complication I can't get over is Lyme disease. Yes, I have limitations, and my physical health is not great, but even so, I might be able to handle a very simple kind of job.

I could be wrong, and if I tried working again, it could end up just as pointless and futile as my past fifty attempts. But I do have to admit that at this point, what stops me from even trying, is a lifetime of heartbreak and failure, to the point where I have truly given up hope that anything could ever work out for me.

I'm very, very slowly and cautiously beginning to open up to the possibility that if I tried just one more time to 'make something of my life', this time it might actually work. Because knowledge is power, and I am armed with a newfound understanding of exactly what my problems are, and how I might be able to work around them. Still, I'm utterly terrified by the prospect, and to be completely honest, deep down I really don't feel like I'm up to the challenge, nor am I ready to try just yet.

But in any case, I found this exercise to be eye-opening, and wondered if anyone else wanted to share their own 'what if' scenarios?


:!: Wow Ashariel. You've really had it tough. I actually think you're really brave for getting out there and doing all of that and trying stuff. I feel the same way you do, being afraid to try again because I might fail. But you don't know; if you put in one last dejected effort, it could be the winning stroke. Ever heard of Susan Boyle? Read her story and it will inspire you to not give up.

Don't focus on the bad things. Focus on the winner you know you are. :roll: I know, I'm cheesy.

I think if I had gotten the support I needed as a child, it would have led to good as well as bad things.

I would have been treated differently from the other kids and would have had an extra tease word thrown at me along with all the others I had to listen to.

I wouldn't have gotten into so many fights.

I would have had a better score for entering university.

I would have gone through life believing I was handicapped in some way and used my AS as an excuse a lot more to not do stuff I didn't like (I'm doing this a lot more now, that I've been diagnosed).

But maybe I would also have joined a great support group and made great friends who understood me a bit better.

One thing I'm sure of is there would have been much less BS in my life; I've always lied to people about why I didn't want to do something or other and it always had something to do with AS but I was afraid of appearing abnormal. That is one of the greatest weights off my shoulders now. :D


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06 Feb 2014, 3:47 am

I think I did based on the fact I made it so far without any label.