Backwards... not accepting my diagnosis any more...!

Page 1 of 1 [ 6 posts ] 

Niamh
Toucan
Toucan

User avatar

Joined: 10 Jul 2010
Age: 34
Gender: Female
Posts: 263

27 Nov 2010, 9:24 pm

It's been half a year now and I'm actually sort of going backwards instead of forwards... When I got diagnosed, I felt positive. I felt the relief of no longer blaming myself and I felt the hope of being able to understand myself and make changes to my lifestyle. I made good progress and at the time I considered myself disabled, but coping.

Then the family got the details. To put it briefly, they all took it negatively and decided to ignore it completely and pressured me to do the same. Since then I have been gradually letting myself get down about it. The stigma from my family really gave me a hard blow. I can't talk about it to the people who are meant to be closest to me, therefore life with my family will never change in the few subtle ways I need it to.

Now, I'm afraid to mention autism or Asperger's to my friends or on Facebook, although I do it anyways sometimes in an attempt to free myself and be the advocate I want to be, and talking to family is a no-no. I'm also starting to push myself over the edge again; when I acknowledged that I have a disability, I stopped when things were too much and I put myself first, but now that my family has done a wonderful job of blurring the line for me, I have begun to blame myself for everything before even considering that I may be suffering an AS-related sensory overload or something else AS-related. And, finally, I'm afraid to get help in secret as I was planning to, because I'm afraid of what might happen should my family find out.

And, thanks to all the above, I'm beginning to get depressed.

I think the worst thing is that I'm no longer accepting that I'm disabled, and that's causing me to pressure myself to do things that affect my health. I was doing really well when I accepted that I had a disability, because in accepting that, I also accepted that I had special needs of my own and that I deserved help in fulfilling those needs. Now, I'm becoming fearful of admitting to disability, and because of that, I'm afraid to seek help, afraid to let others down by putting myself first and I don't feel like I deserve help with anything even though I do need some. I don't have a severe case, but that doesn't make it ok for me to go on like this.

My reasons for posting this?
1) If you're recently/being diagnosed, or if your family member/friend/colleague is being/has been diagnosed, don't let this happen to them. Don't stigmatize it. Be mature about it and simply ask about it and let the person explain it. Give yourself time to understand their differences, and go do some research in your spare time.
2) If any of you has been through this or knows someone who has, any advice would be great...!



Wallourdes
Veteran
Veteran

User avatar

Joined: 24 Jul 2010
Age: 37
Gender: Male
Posts: 4,589
Location: Netherlands

27 Nov 2010, 9:57 pm

It's not your diagnosis that is hampering you, it's two things:
1. The lack of acceptance of your autism and your needs by your family
2. You seeing autism as a disability, instead seeing the ABILITY side of it too. It might be in the books as an disorder/disability but that is just one side of the equation.

Oh, don't go hypochondriac on everything you read aside from your diagnosis (be critical about what you've read, discuss point by point with the person who took the diagnostic) about autism and that it automaticly applies to you. This doesn't mean you can't do you're minor strengths, they are just tough to do - not impossible!

Nothing has changed - you are still you!

Cheerfully,
Wallourdes


_________________
"It all start with Hoborg, a being who had to create, because... he had to. He make the world full of beauty and wonder. This world, the Neverhood, a world where he could live forever and ever more!"


Niamh
Toucan
Toucan

User avatar

Joined: 10 Jul 2010
Age: 34
Gender: Female
Posts: 263

28 Nov 2010, 8:16 am

On the plus side, I have actually accepted the positive things about AS and the good that comes from it. I wouldn't be where I am without it! I've made some achievements that others my age would envy. I have a sort of freedom within me to do things that others don't even consider and that has brought me a long way. I'm not stuck inside a box! I am enabled as well as disabled, it's a mixture. But it's not the abilities that need to be dealt with, it's the disability that brings difficulties that must not be overlooked. My problem here is that I'm being pressured to think that it's absolutely wrong to see myself as in any way disabled and to ignore the problems I have. My family treat them as if they're imaginary and/or my own fault. So I'm in a messy situation where I have to keep reminding myself that there are things/situations/people that I need to be careful around or just avoid completely.

But that brings me to another point - I don't believe that autism defines me and I really don't want it to! I took the diagnosis positively and I still feel like I was right in finding out what was going on all along, but now I'm feeling pressured by stigma. What I feel has happened for me is that, instead of being able to finally open up to my family about what was really going on all along, I feel trapped even more than before and I have to deal with things alone when I'm with them, and it creates more loneliness than there already is.

So with all that mixed in together I'm just getting really confused as to how I should see myself, whether I should start questioning everything all over again or if I should just work on what I learned from the diagnosis and my own experiences in relation to it... I think I was a lot happier when I accepted both ability and disability equally and simply worked on the disability side of it while enjoying the ability side! Guess it's a matter of drilling that back into my head...



SaNcheNuSS
Veteran
Veteran

User avatar

Joined: 30 Jun 2010
Age: 42
Gender: Male
Posts: 500

29 Nov 2010, 12:43 pm

You need to understand that you are not disabled. They put you under that category because you are special and brought here for a special purpose that they do not know the meaning of. Start thinking of yourself as unique, someone that was singled out from the rest of the mundane pack. Once you understand this insight then you will learn to appreciate and love yourself more. Then nothing can stop you.



Craig28
Veteran
Veteran

User avatar

Joined: 2 Jul 2010
Age: 43
Gender: Male
Posts: 3,258

29 Nov 2010, 12:47 pm

I did the same with my AS I was diagnosed at 16 in 1998 and it was a couple of years ago that I was getting less help and respect from the service when I decided to think "f**k it, I no longer recognise this disease".

Yes, AS is a disease. It depends how you look at it, most would see AS as a disorder, but the few people hurt, including myself she it as a disease. Its just the medical profession being trolls. Ruining lives and offering next to nothing in services. Bastards.



Niamh
Toucan
Toucan

User avatar

Joined: 10 Jul 2010
Age: 34
Gender: Female
Posts: 263

29 Nov 2010, 1:09 pm

I have no problem seeing myself as disabled. That wasn't stuck on me by anyone and it's the ridiculous fear of that that caused my family to treat me the shameful way they did this summer. Failing to recognize that has lead me to failing to recognize that I have special needs, and that makes me put myself in bad situations over and over. I forget to consider whether I can or can't do something and end up being sick because I pushed myself too far. There shouldn't be such a taboo around the word "disabled". It doesn't mean "useless"!