Good days and bad

[forrestgump]

Feeling a bit low at the moment. My son, Ben, was diagnosed as AS a few weeks ago. This confirmed everything we already thought - since last summer when his head-teacher suggested he might be on the spectrum, we have done quite a lot of reading and researching. Hopefully this will lead to him getting a statement, which he desperately needs. I'm in two minds about getting a diagnosis myself as well. I'm as sure as I can be that I'm on the spectrum and having read a lot of other people's experiences, it seems that 'knowing for sure' might not necessarily help much. My partner is ambivalent - she says I'm the person I always was and a diagnosis won't change that. So far I've resisted the temptation to start the ball rolling and call NAS or talk to my GP.

 

Just really feeling a bit down about myself. The last 8 months have been a gradual realisation that I'm almost certainly AS and it puts a lot of my childhood in context. Never feeling comfortable as part of a group, badly bullied from 11 onwards. Always felt detached, zero empathy for other people. I'm 44 now, outwardly easy-going and happy I guess, fairly successful, work in the Arts, have my own company. A lot of 'work-related' friends but next to none outside. I'm scared for my son's future, but on the other hand, hope I can help him too. I adore him. He's the most amazing little boy, fascinated by electricity, lights, batteries, recently circuits, but struggling bigtime at school, especially with reading and writing.

 

Some days, I don't think about being autistic (work is so busy at the moment, I often don't get much time to think about anything else) but other days I feel down and confused, questioning. Something from the past will come into my head and I'll think about it and knowing about AS puts it into perspective, but I get so frustrated about all the years I've not known and assumed there were other reasons for me not getting ahead, feeling stifled socially, shy and awkward.

 

I try to talk to my partner about it but she doesn't really engage. I think she's a bit bored to be honest! Lot on her plate and Ben is (rightly) the priority. It's hard feeling positive although to the outside world, I think I come across as a really positive, hard-working, pro-active person, but quite often feel so daunted by everything. I don't want to be negative about AS, my own or Ben's, but so many questions and seems to be taking me forever to put it all into perspective.

 

That's it really.

[dm2010]

"He's the most amazing little boy, fascinated by electricity, lights, batteries, recently circuits, but struggling bigtime at school, especially with reading and writing."

 

Well there's a start. He should be joining the school electronics club !

 

I had late diagnosed AS too but I doubt from many people's experiences on here whether an earlier diagnosis would have helped. I still feel that my childhood was stolen from me, as many on here do.

 

The feeling that I'm an incomplete person still persists. There are compensations of course, my professional abilities are much stronger than they otherwise would be. But does that make up for what I have lost. I'm not so sure.

Edited April 22, 2011 by dm2010

[oxgirl]

I remember my husband going through a lot of what you describe when my son was diagnosed 13 years ago. We were advised to read a book on AS before our next visit to the consultant and the day before the visit he still hadn't looked at it. When I challenged him about not reading the book, he broke down in tears and ran upstairs. He said he was terrified of reading it and of finding out things about himself that he didn't want to know. Anyway, he eventually did read the book and our son was diagnosed and, during that time, my husband had a massive identity crisis, for want of a better term. He kept saying that the more he found out, the more he was convinced he had AS too and that it made him feel like his whole childhood had somehow been a lie and that he didn't feel like he knew what or who he was anymore. He was very self-conscious for a long time, he suddenly felt that everything he said to people was coming across as 'weird' (his wording) and that when he was talking to people he was struck by how odd he was sounding and was convinced that everyone was thinking him weird. It took him many months to come to terms with himself again and to gradually feel at peace with himself. Now, so many years later, he's fine with it and accepts our son's diagnosis and accepts himself as himself, but I do remember him going through this difficult period of almost re-evaluating himself and his whole life anew.

 

Hang in there, it will get easier. Whether you are dx AS or not, you'll come to feel at ease with yourself again in time.

 

~ Mel ~

[sesley]

hi i can relate to my son,because we share the same characteristics. autism is more often inherited.Our consultant said, often parents can see themselves in their child that gets diagnosed with autism. If you share your sons challenges,you will hopefully be more in tune with him and understand more because of your own experiences. you are who you are, a human being, a different and unique one,just like your son.

[forrestgump]

I think you hit the nail on the head, Mel. I think identity crisis pretty well sums it up! I am very aware of myself now, especially in social situations. Friendships have often been difficult. I seem to drift from and lose friends easily. I'm not sure it's ever bothered me that much (I'm fairly happy with my own company) until I started thinking about it. It seems every day now is a constant, gritty re-evaluation of the past.

 

One thing I struggle with often. I went to a private boarding school, and while I was there was horrendously bullied, especially by one particular boy, let's call him P. For years, I put it down to the fact I was overweight as a teenager and that made me unpopular. But this boy was particularly awful. For years, he was like this ghost from the past in my head, the person I could blame the most for my teenage years being so miserable ('lost childhood' resonates bigtime with me dm2010). But now I don't know. I can see Ben distancing himself and being distanced from his peers, some of them (most in fact) being kind, some not, but the slightest negative thing he says or I see and I feel it's like history repeating. I don't judge his friends (or try not to) but I've started feeling more understanding of P and his antics. I'm not saying I deserved it, but I wasn't aware that I was different. Now I think about it, it's all there of course. I was taken advantage of and laughed at constantly as a teenager and I'm very fearful for my son's future.

 

It's not all negative though, Selsey, you're right! I'm just a bit worried this is all making me stupidly introspective. I know I'm unique and feel positive about myself. I guess I feel there was a lot of wasted time, if only I'd known etc... Whatever happens, I really hope I can be a help to Ben as he grows up, explaining stuff to him and helping. He's a very emotional boy and I love him to pieces. We have always been very close.

[sesley]

The past is gone there is nothing you can do about it.But the present you can, and thats what you focus on the present day and how you can be the best each each day for you and your family each day at a time. To be honest most people have regrets about the past,but don't allow the past to effect your present and future.

[Lyndalou]

Think I'm in a similar position to you at the moment. I'm coming to terms with the fact that my childhood (until age 10) was not as idyllic as I always thought it was and as I find out more and more about AS, I'm seeing events which have happened in my life from a completely new perspective. This has been a bitter pill to swallow but I think it's important to acknowledge the reasons you have gone through what you have, in order to in time leave it behind you.

 

My husband says he met me and fell in love with me for who I am and (although my paranoia kicks in and I don't totally believe him all the time) that any condition I do or do not have doesn't matter to him. He also says he doesn't lay any blame at my door for our son having an ASD (although I do right now). I feel so relieved and lucky that this is the reaction he has had and I feel stronger because of it. I also have two beautiful children who need me. If you have people who believe in you as it sounds like your wife does, hold on to that!