Losing it

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Hi everyone, joined by recommendation. I was late dx in oct 2012 following my sons dx of ASD. I went from feeling like a social failure and basically a horrible person, not fit to be in the company of others to elation when dx to finally understand ' why'. Now I feel bad again, I don't know who I am, been pretending for so long, don't know who I want to be, don't want to participate in this world anymore. My feelings are hurt so much when I am misunderstood. Is this a normal course of events following dx? I have a 5 yr old daughter who I believe to have AS, she us going through MDA now. I want to be a good aspie role model for her, I want her to see positive ASD. Any tips, will I move on from these awful feelings, will I find myself? Thanks.

Hi, nicola2401!
I am 17, so I haven't had experience with parenthood. I do, however, have a parent with asperger's syndrome. I'll tell you about my relationship with him, because I think it might help with your situation...

My dad doesn't like to talk to me about him having aspeger's. I didn't even know that there was a diagnosis until well after he did. I just knew that he didn't like to smile, felt awkward around people, had a wonderfully sick sense of humor, was obsessed with music and technology, and liked being alone.
I'm close with my mother, but I've always known that I'm like my dad. We like many of the same things, we have similar social issues and aversion to touch. I just didn't know that we weren't the only ones.
Kids used to tease me for being hyperlexic and always adhering to rules. They called me "bossy," "smartypants," and "freak." The nicer adults called me "smart" and "a reader." These were the only statuses I was given, the only labels I could apply to both my dad and myself. We were loners, freaks, and intellectuals. Later, I condensed this to the less derogatory "geek."
Years ago, I started reading up on asperger's and I realized that I'm on the spectrum. I told my mom and she said that she'd known for a while but that when she had tried to bring it up with my dad, he shut her down. Said that I didn't have it.
I'm not exactly sure why he says this, but I have 2 theories.
His mother always thought that something was seriously wrong with him (he didn't talk for a while) and his mental processes were tested all throughout childhood. He endured numerous tests and hardships and here I was, ready with a self-diagnosis backed up by genetics. No pain, no tests. Just "hey, I fit this profile and, because it's genetic, I probably have it too!" I got an easy diagnosis, backed up by the one he spent his whole life trying to find.
That brings me to my second theory. He feels guilty because I got it from him. Many parents go through this. Of course, I've never understood this one. It makes no sense blaming my parents for faulty (or, in this case, unusual) genetics because, well, I AM those genetics. Asperger's is a part of me just as is my eye color, build, weak lungs, and strong tendons. I would never blame him for any of that.

I just want to be able to say this to my dad. Let him know that, just because I got off easy on the diagnosis or because I have his genetics, doesn't make my diagnosis less valid. It was his hard work that made it easier for me to find myself and others like me. I owe him so much of my whole identity and I wish that he could understand that.

Just by coming on here and asking questions, you are giving your kids a better foothold in the world. You can help them understand their place, their lineage, and their own minds.
Even though you feel lost now, remember that you are helping them get un-lost. This is a parent's job and, by participating in such a huge part of your child's life, I think that you'll find yourself in the mix.

Good luck with the diagnoses and welcome to Wrong Planet.
-SM9K

Heartfelt thanks SpaceMaster9000.

Hello Nicola

Welcome.

I think all I can really do is sympathise. I was also diagnosed as an adult, and went through a very similar cycle.

I went from thinking I was highly empathic, to realising I wasn't, to understanding why I was socially marginalised to elation when I understood why and could now tackle it, back into the pit when I realised it wasn't going to be that simple (now spent months obsessing over the social skills paradox) and have now settled into a pit oscillating from borderline function (read - I can read and communicate using a keyboard) to major social anxiety and being curled up in a heap hating myself.

(At least I now understand the empathy question: I score well above average on tests of affective empathy, but dismally on tests of cognitive empathy: I have a strong sense of social justice, but am effectively totally face-blind, so social relationships are a nightmare.)

So, how do you provide positive aspie role models? I suppose by being a good mother, although I'm in no position to advise on what that means.

I would also provide as much reading material as you possibly can on social skills training, how to be an aspie who functions in allistic society, successful aspies and so on. The world is more difficult for people like us (without the lecture on kyriarchy) but, especially if you can apply things like a special interest, you can carve out a place for yourself, and they need to learn that a lot earlier than I did!

I think what children need most has nothing to do with labels, give them your love and your complete support and they will put up with a lot. I have ASD and I believe that my mother had a lot of traits, whether it is ASD I'll never know as a conversation like that is impossible with her.

Give your children the availability of your conversation with them about whatever they need to talk about! I often feel I am not a good enough mother, in part because I really do feel like a social failure. But when I look through the eyes of others at me with my children, please understand the reality that there is joy and connection that people often go without. And as inadequate and bad as I often feel, I know that joy and connection they have is also real and what I lacked growing up, it is what children need and deserve, give your children that as much as you can. It will help you as well.

I do feel honored by, and treasure, my children's love and respect for me. I don't feel I deserve it, and I expect at any moment it may be gone. But right now, they love me and I love them. My child's counselor tells me it is important to act strong for them, so they feel safer, and so I guess I would encourage you if you get overwhelmed to where they see this that you let them see you have hope you will get past this, so they can believe that they will get past the things that feel, to them, to be too much. Which is not easy, and so the other thing I did that helped was, though I was not diagnosed with ASD until a few years ago, I started to see the similarities in me to behavior in my child related to her having ASD, so I did sort of get that there were issues for me, and I leaned on service providers when I was confused. You have to be careful about that, it can backfire especially if they are employed by the school. But sometimes, when I am confused, I have needed things explained and sometimes, if I ask the right person, those explanations can make a big difference from losing it over social confusion to understanding how the social ecosystem functions and trying to survive it and effectively advocate. Hope this isn't too confusing, hope it helps some.

Yes, nicola2401, the emotional rollercoaster effect is not an uncommon occurrence after adult diagnosis.

There's almost always that initial sense of elation when you finally have an explanation for the handicaps you've struggled with all your life, all those traits of oddness that you were made to feel were flaws in your personality, are the result of a neurological dysfunction after all and it has an official name! It's cathartic, to feel free of the guilt of being a weirdo - it's not your fault!

Then after a little while, the realization sets in that it is, in fact, the wiring of your brain that's set up differently and that's never going to change. Now, in my case, I knew it was silly to let that bother me, because I had realized years ago that whatever it was that had made me so different than everybody else, it wasn't going to change (god knows, enough people had tried to change me over the years). Still, I was overcome for a while, with a sense of melancholy, while I processed the solidity of that as a medical fact. But those sad feelings passed.

It's just a lot for the ego personality to digest, this new picture of who and what we are - but that's all it is - just a mental self-image - you're no different today than you were before you had ever heard of High Functioning Autism or Asperger Syndrome. You just have a few pieces of knowledge you didn't have before. It takes a little time to assimilate that knowledge and fit it into your mental picture of yourself. You'll get back to normal after a bit. Well, you know - 'normal' for us

Hi nicola2401,
Welcome to Wrong planet

Welcome

The only advise I have to help you with moving on, is to embrace who you are. Learn as much as you can about AS, and work with what you have. Encourage strengths, and recognise weakness, so that you may better live harmoniously with yourself.

Sure, learning to adjust with NTs is always crucial in an Nt world, but be sure to be true to yourself, and be proud of it. Nothing makes an Aspie sad, like being someone they're not 24/7. All this does is leave us feeling empty, and unfulfilled.

Your child will look to you for examples on how to live, so teaching them to be wary of themselves, their AS traits, and of others around them, while being able to live a happy life, is important for young children to be exposed to.

Also, as you have a daughter, be wary that AS presents itself differently with girls; I recommend reading Aspergirls, by Rudy Simmons. If you order it online from the book depository, you may be entitled to free shipping.

Good luck!

Welcome