Memories of my own childhood social problems

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Hi everyone,
I was just reading the thread about where people go for support, and seeing as WP is one of my best places for getting support, I just wanted to talk a little. Sorry if I don't sound very coherent; it's late at night.
So I was reading Caitlin's article that she posted the link to in that post about where people go for support, and yeah, it suddenly had me crying, hard. I realized that since my daughter was diagnosed with autism 5 months ago, I haven't really let myself fall apart, like many parents do when their child gets the diagnosis. I've been acting like a "warrior mama" as Caitlin put it. Holding my head up high, being positive and strong and taking everything in my stride. Some people have remarked on how well I seem to be taking the diagnosis. The truth is, I didn't stop to acknowledge, even to myself, that deep down I'm terrified. Not that I think autism is a bad thing; some of the geatest minds in history were autistic. Neurodiversity rocks, I say! What I'm terrified of is my daughter with autism having to live in a world of neurotypicals. One thing Caitlin wrote really hit me, the thing about being rejected by everyone. I spent most of my life like that and I remember what a terrifying,
confusing and crippling way it was to live. I don't know if I'm autistic myself; I may be slight
aspergers or BAP, but I did grow up with ongoing anxiety and depression issues. I actually
had full-blown social anxiety disorder as a young child. And I remember how day-to-day
life, particularly school, was just terrifying and eroding to my self-esteem. I found it very
hard to make friends. I tended to make one friend and then latch onto them like a leech,
they were like my crutch. And then if they were sick and away from school, it was a personal crisis for me and I'd be panicking because my only 'safe' person was gone. The feeling of never really fitting in, and being an outcast, it's something you never quite forget.
So that's what I'm terrified about for my own daughter, I guess. That she'll have to deal
with the same rejection, fear, helplessness. I really hope not. Maybe she'll be one of those
auties who doesn't care about having friends and doesn't really need them. Or maybe she'll
make friends like anyone else and I'm just worrying about nothing.

Just wanted to get that off my chest! I've copied and pasted part of Caitlin's article below:

It sounds like we are in the same place. I have never been good socially, I am fine if I have a role or a job, so I can work with the public and even do public speaking at my work. We all know what my role is, and it is safe. At the kids school, I volunteer, I have a role and a job - so I am just fine with the other parents. This actually serves to isolate me even more, because people assume that I'm fine and need no support. I am always positive and hold myself together great. My DS travels for a living and is gone at least 1/2 the year - so he doesn't really live this stuff AND get really frustrated by it. Our families are either distant by miles or emotion. Both sets of parents are dead.

But.... this business about having a child that is profoundly different but looks like everyone else can be crippling. Not to me, I have always practiced the weird is good philosophy, way before AS. But in the community having a smart kid who melts down and has to be restrained in class, is pretty isolating. All of the sudden what I thought was my village closed us out.

Now honestly, when we were trying to figure out what was wrong - what was causing my baby to just flip out sometimes, that was truly horrible. Funny though, the pdoc mentioned AS two years ago but I just didn't even hear it because I had bought into the stereotypes of no eyecontact and not wanting to be touched. We were seeking desperately to find an answer, thinking it was bipolar or something that could be fixed by meds. Finally a pediatric neurologist said, until you address the AS issues, he wont get better. That was an Ah Ha moment.

That was this spring and the begining of healing. Once I really started researching what AS could look like, it did fit. Finally, the problems and issues had a name, and there were some ideas on how to handle it. The meds and the meltdowns have both reduced dramatically.m (he probably does have some sort of mood disorder, but it was the unaddresses AS that was really causing him grief),

It doesn't change that now I know, it's not temporary. The business about DS not fitting into the village won't be fixed by a mood stabilizer. So, I never fell apart either. As a matter of fact, I always thought of the brilliance of the people with AS that I knew, and thought there was really nothing to fall apart about. Until I was reading Caitlins post, in my cubicle in my office, crying.

I guess the knoweledge that we will never "fit in" hit me harder than I knew. I guess the feeling of emotional isolation is sadder than I thought.

I sure love my baby though!

i think thats a universal fear for parents of kids with any "difference".

i firmly believe that there is one huge factor that will make our kids' lives vastly different from what you experienced, or what we hear many of the adult autistics on this site describe. KNOWLEDGE. we KNOW what makes the difference. we can help our kids learn to navigate the world. we can teach them to analyze social situations that went awry and figure out ways to adjust for more positive outcomes. we can help them become aware of sensory triggers and how to avoid or mitigate them. we can get them supports in school to make it a more autistic friendly environment. we can get them into social skills classes, help steer them towards schooling and professions that play into their special interests.

knowledge IS power.

nothing we know or do is going to guarantee a happy childhood of course, thats simply not possible. but i think knowing the diagnosis means we can help our kids understand themselves and the world around them. growing up wont be perfect, but it rarely is even for neurotypical children who are fat, skinny, smart, short, funny looking, quirky... all kinds of things that make them different even if neurotypical. being neurotypical doesnt guarantee a happy childhood either. but hopefully the knowledge we hold is enough to help our kids avoid a traumatic childhood and move them into something closer to the average childhood experience.

Azurecrayon - ABSOLITELY!! !! Knowing has changed our world by 180 degrees. Everything is better. So much better that I just didn't really accept that I had unaddressed feelings until I read that post yesterday.

The meltdowns are better, my level of hope is exponentially better. That said, the hard work and isolation is exhausting and somewhat saddening and now I am clear - this isn't going anywhere. What has made our lives better, is that we know have a type of map to follow. That's good - but it's a map through some pretty rocky terrain that only those who have travelled it can relate to. The rest of my "world" doesn't even know that the map exisits.

Hmm... When did you start writing my biography? Done a pretty good job there.

I wonder what might have been - whether I would have been more or less confused as a child, more or less able to comprehend and understand what had been going on, had I been diagnosed back then. I do know I wouldn't have questioned my own sanity as often as I did... wait that's not right... I was always secure in my logic, but questioned why noone else understood it... so I spent a lot of my time double checking myself, both before and after I said or did anything... A lot of wasted effort and time and some danger of self doubt and a few times where I almost went into depression...

I would certainly have been better off knowing that I wasn't alone.
I would certainly have been stronger and safer and more comfortable in my own skin.
If only...

Oddfiction - I'm so sorry that you experienced the same stuff while growing up I hope things have improved with adulthood and with a diagnosis.
Kailuamom - it was also a long road getting my daughter diagnosed. She has regular autism, not aspergers, so it was developmental things that had me baffled and searching for answers rather than behavior, but she's still young and the behavioral/psychological stuff may happen later... Getting a diagnosis and the answers to a hundred questions certainly was a relief, though. I'd say the not knowing was worse than the knowing in terms of finally getting a diagnosis. I was so sick of drs just saying that my daughter had "delays" but they didn't know why.
Azurecrayon - That is so true about knowledge! Knowledge is the key to everything! Yes, in the 21st century, kids with ASD have better prospects than ever before . There is so much more awareness, research, more therapists, programs, etc. I wish my parents had got me help for my extreme social anxiety issues in childhood. The school wanted me to see a psychologist, but my mom's reaction was basically "I will not bear the shame of having a child of mine see a psychologist! Psychologists are for kooks!" but I DID need to see a freakin' psychologist. It could have spared me a lot of pain if I'd got the right treatment and been given meds or something. At least those sorts of stigmas don't exist any more. And I can draw on my own experience and understand how important it is to get my child the help she needs.

I recognize so much of myself in my son -- which makes me grateful for how very different things are now than they were when I was a kid. Not perfect, of course, still miles of progress that must be made. But we have names for his issues, we know to look for solutions instead of yelling at him to cut it out, we can find specialists and educated parents and products to help him... and we can give lots of love and support instead of blame. So take heart. Things for your child are almost bound to be better than they were for you.

I think I'm glad that my AS child is a boy. The reason I say that is that your description of your childhood social anxiety fits my NT daughter to a T, and I've been assured by mothers of other girls in her school that this is actually within the range of normal. Seriously. But we did get her to see a psychologist last year, and it did help, but life keeps beating back at her, and now I'm seeing it all start again. New school year, new anxiety. Sigh. Girls are mean to each other in a way that boys are not. With a boy, you know where the devils are; in girl culture, you are never sure. Hence, anxiety.

I do think we all need our times to cry. I think mine was when my son had a poor soccer team placement, and I realized how much I was relying on the community around us to understand and protect my child. The minute he was away from the safety net, things got a whole lot harder. Fortunately, the league was able to move him to a team with a coach he knew, but that was the point I realized the safety net was only a net, and not a solution.

But he is doing really well right now. Really well. You cry, you advocate, and you keep doing your best.

We've had plenty of teachers, btw, who see the gem that my son really is. Every child deserves at least a few of those.

Going to post elsewhere because there is too much right now...but thank you all. Yes.

It has been very difficult separating my son's stuff from my own - in many ways he is better off - more supports, and, well - he's a better person than I am and a better kid than I was, smarter, has more ability. But it is so hard watching and revisiting and keeping my own stuff separate.

I hear you. Am constantly having to remind myself that he is not me.