For Genisa

Someone commented on the Huffington Post piece I wrote – (I hesitated printing it here, because I don’t want you to feel “outed” but I also didn’t want to not mention it because you’re reaching out and the Letter to You was in fact to you and anyone else who feels as you do.)

So Genisa, I hope it’s okay to reprint the comment you left on the Huffington Post here in it’s entirety so that others may find you and reach back to you.

Genisa wrote:

“Thank you for the kind words. I didn’t realize anyone can see how you get to a blog by what you type on Google or on the blogs searches. I did type in that phrase a few weeks ago around April 7th. I would feel bad to think I made someone else feel sad by what I was looking for. I was trying to find others that felt the same way or to read something that I could relate to that would help to make me feel like there was hope, beyond the hopelessness I was feeling and still do feel. I feel so alone because of my inability to socialize appropriately, effectively communicate (especially verbally), and how I always say the wrong thing and make everyone angry at me. I’m an adult, I’m a female and I have Aspegers. I’m invisible to much of society.  I love volunteering, but for some reason others don’t want me to help out.  It really hurts to feel rejected by everyone, even within a group that should understand you because they have children on the autism spectrum themselves.  I want so much to see why I am not accepted and to be able to change it, but I can only change so much.  We do have feelings and we do have abilities if people would just see past our difficulties.”

I then responded with a very long reply,  one I now regret having written as I had to submit it in three parts due to HuffPo’s policy of a 250 word limit on comments.  As of this writing they’ve only published the 3rd part, which is a little horrifying as my words will be taken out of context and people may think I am drawing parallels between addiction and eating disorders and autism, which I AM NOT!  I’m not sure where the first two parts went, but if you just read the last part of my reply, it won’t make any sense or if it does, my guess is the wrong conclusions will be drawn, so I’m going to try to respond in full again here.  I didn’t copy my response first before submitting it, so this response will be slightly different.  Please, please refrain from drawing conclusions and judging my response until you’ve read my full reply and even then do keep in mind I am speaking of the feelings which may or may not be shared and not the circumstances.   Here goes…

Genisa!  I am so glad you reached out and commented.  If you haven’t already gone to the Autism Positivity 2012 Flash Blog, do.  Because of those words typed into Google, you galvanized and inspired a group of bloggers to create the Autism Positivity Flash Blog.  I don’t know how many people have contributed at this moment, but I do know as of yesterday morning over 115 people had written a reply to your words.  Those replies are from Autists, Aspies, Parents of Aspergers and Parents of Autists.  Over 115 people, Genisa.  You are NOT alone.  Go to the flash blog read the responses from people, most of them have blogs, go to their blogs and reach out to the ones that speak to you.  Many will respond.  You have found your people!

When I was in my 20′s I was suicidal.  (This is not something I often talk about.) I felt utterly hopeless, I had an eating disorder, was bulimic with anorexic tendencies that I could not contain or control, my life revolved around eating, puking, how much I weighed and where and what I would eat next, all as a way to quell my feelings of self loathing.  To someone who’s never had an eating disorder it must sound completely insane.  And, in many ways it was.  I felt horrible about myself, I hated who I was.  And I assumed everyone else felt the same about me as I did. I was unlovable.  Of that I was sure.  Please know that I am in no way equating my addiction and eating disorder to autism.  I am simply describing the feelings of isolation and sadness that can be common in both.

It took a long time for me to get the help I needed in order to stop.  But once I found people like myself, (and this is where the similarity in our stories lie) I was able to see, finally, that I was NOT alone.  I remember thinking  it couldn’t be true.  But it was.  There were hundreds and hundreds of people, in every city all over the world, some were suffering just as I was, others knew what it was to suffer, but had moved beyond those painful feelings.  That was the first step out of my personal hell and into another way of living.  A way of living where I could look at myself in the mirror and finally, finally like what I saw staring back at me.  Over time, with a great deal of support, I was able to begin behaving in ways that were honest and true to myself.  I was able to slowly stop trying to please all those other people that I felt condemned me, saw me as a failure, as a “bad” person.  And now, (I’m in my 50′s) my life is better than I ever could have imagined.  I have a wonderful husband who knows me and loves me exactly as I am, who loves me even when I’m angry, sad, irritated and feeling grumpy.  I have two beautiful, amazing and unique children, one who is considered neurotypical and one who is autistic.  And I am a very, very happy human being.  But thirty years ago, I was not.

You are beautiful, Genisa.  Let us love you until you can love yourself.  (Someone said that to me early on in my recovery from bulimia – I had no idea what they were talking about and I didn’t believe them, anyway.  But they did no matter what I said or felt they loved me and eventually I was able to too.)  Reach out as you have, again and again, find those you feel comfortable talking to, develop a relationship with them.  You are not alone, Genisa.  You are so not alone.  And you ARE beautiful.  Please reach out to me anytime.  I, like so many others, am here.

For my latest piece in the Huffington Post, click ‘here
To contribute to the Autism Positivity Blog click ‘here

7 responses to “For Genisa

  1. Very powerful posts — both yours and Genisa’s. It’s very clear to me Ariane that you are not equating eating disorders to autism. What does come across very well is the common ground of living and suffering in isolation and then finding support in a community of people who share common challenges and experiences. We all need that kind of ‘family’ support, especially for those of us who didn’t or still can’t get it from our own birth families. We are not alone, none of us — and we all need love, support and encouragement. I hope Genisa finds all of that and more — and I wish the same for all of us who suffer in so many different forms of isolation, neglect, rejection and hostility.

    • Thank you so much Richard. You’ve summed up what I was trying to say and felt I was muddling through, perfectly. I’ve edited this post about a dozen times now and at one point thought I should just delete the whole thing, except that I’d already published a version of it on the Huffington Post!

  2. My reply to the first part of your post only posted my first and last post. Here is what I posted, but did not post on the Huffinton post:

    I was wondering about the continuted part being part 3. I hope they will post it. I will then read part 3 so it makes sense :-)
    I also had to shorten my reply as they have a limit on words, so my original post from yesterday was shortened to fit their requirement. Sometimes less is better, at least when it comes to me and my talking. I tend to talk too much, which is a female Aspergers trait. That combined with not fully comprehending social situations, or reading people right, can make for very awkward and upsetting situations. I am a very sensitive person. I don’t always show it, but I do feel it. I am luck to have found a NT husband and we have two boys. One has been diagnosed as pdd/nos(but was severe when he was younger. He is now 11. My other has yet to get a diagnosis, but he is a little mini-me, so I dread for his future. It is different being the Mom with Aspergers as there isn’t a lot out there when you “google” it. It is mostly about Dads with Aspegers from the NT moms perspective, but I find it all does help.
    2. I have “googled” quiet a few phrases, as that is where I go to find anything when I need an answer. In the past month, I have “googled”: “alone”, “lost”, “seeing the world as it goes on, from behind glass”,” alone in a crowd”, support services for adults in my city(to which I really found none for those concidered “too high or too old” on the autism spectrum. ) I think I fit the “too old” as I am now 37. “What is life like without Aspegers”, “I wish I didn’t have Aspegers”, “puzzle piece that doesn’t fit” , etc. Also look up pics to explain how I feel and I use them on FB to explain to others how I feel since many times, my words just don’t seem to do. I also have great artistic ability and had gone to an Art college on a partial scholarship back when I was right out of college. Back then, I was not diagnosed and had no idea as to what I needed and I got very depressed. Aspergers was only recognized in the U.S since 1994 and I graduated from high school in 1993. Once an adult, they don’t even look at you for a possiblitiy for an autism spectrum disorder. Many seem to think it disappears after 21. It doesn’t.
    3. As I said, I’m now 37, but wasn’t diagnosed till I was 34 with Aspergers. Diagnosed with many other labels, but none really fit. It wasn’t till a new Dr. I took my son to, that she diagnosed Aspergers, which at the time, had no idea what it was. I “googled” it and found that it didn’t fit my son, but it really fit me and my whole life. My son fit the regressive autism. It was then that I got assessed from a professional that had knowledge in Aspergers in women. It has not been an easy life, but at least I know why I never fit in as a child and now as an adult and have no friends, beyond ones my husband has. I used to volunteer a lot, but no longer do because any support I did have, such as an advocate, Aspergers therapist(can’t afford to drive to the only place that accepts adults and is a 115 mile round trip drive) had no respite for 6 months and my marriage is now suffering greatly from it. Not that our marriage was all peaches and cream before hand, because being the wife half of the marriage makes for even a more difficult situation than I feel it does for when the husband has it. It is usually the wife in the marriage that is expected to “change” or make it work.
    4. I need my husband to do this, and I have found that men do not have this ability, or at least the ones that I know were married to females with Aspergers. Many end in divorce, also. We have held on for going on 12 years. I have so much to say, but no one to say it to. When I do want to talk to someone, there really is no willing listeners. I have people tell me that if I want something bad enough, I can achieve it. How do I change the way I am wired? I can’t. It is the way I am. I volunteers with quite a few things for my kids a couple years ago, but I found that there really isn’t much support, or understanding from others, so I have slowly dropped out of most of it. At one point, I was on the board for our local Challenger league baseball organization(for special needs kids) and coach for my son team; assistant cubmaster and assistant den leader for my sons Cub Scouts pack. member of my sons schools parent teacher organization; Room parent; committee member on our local autism groups fundraiser committee; on a policy council for my younger sons head start, etc.
    5. I loved it but it was such a struggle to get anyone to accommodate my needs on most of them, or to get them to understand me and the way I did things or thought, or they just can’t see my abilities beyond my difficulties. I struggle to just get out of bed many days, before the kids come home from school. Coffee keeps me going. I love my family very much and I want what is best for them. I fight like crazy for my sons needs at school with his IEP and have done most of it all by myself. I have had a difficult life, along with growing up in a very dysfunctional family. My brother was assessed for autism when he was about 8, but when my mom asked about me, they told her that “girls don’t have autism”. We all know the truth about that now, but it is about 30 years too late for me to have gained something from early intervention as a child. I do have several perspectives of living with autism though. I am a Mom with Aspergers raising kids on the autism spectrum; I am a wife with Aspegers; I am an adult with Aspegers. I can tell you it is all very difficult and many times, you feel very alone. It is hard to find other moms on the spectrum, because many are not even diagnosed.
    6. They struggle through life, and still don’t know why. Having an answer does help, because I know I am not alone, even though I feel like it, I know that I am not “crazy”, it is that I am wired differently and experience things unlike many others and they either do not want to or can’t see it from how I see it. I do my best, but it is a daily struggle. I know I can’t be the only one out there that has typed in “I wish I didn’t have Aspergers, and I hope the all can find the supports they need to survive.
    p.s. also wanted to say, my Dad died when I was 20 and my Mom when I was 31, so when it came to support from the ones that love you and care about you the most(or at least are supposed to) have already passed away, you feel very alone. It is very difficult when your have Aspegers and your parents are are no longer around to support you like you see other parents doing for their adult children. I’m lucky to have an Aunt in town that I can talk to and she is very supportive. She is like a second Mom and I don’t know what I would do without her. I am very thankful for her in my life as I am about having my husband and my two boys here with me as we all go on our journey in life.

    • I am so happy you wrote, Genisa. I have read every word you’ve written here and when the Huffington Post gets around to publishing the rest of your comment, then others will read your words too. I know from all the emails I’m getting on FaceBook that many, many people are thinking about you and are reaching out to you there as well.
      No, you are certainly NOT the only one who’s typed those words into Google. I think it is because you aren’t the only one who has, that so many wanted to create a blog to support you and so many others like you who feel alone and isolated and misunderstood. Sometimes just knowing you have people who care about you and whom you can reach out to can make a big difference. It won’t change the way society shuns those with disabilities, it doesn’t mean people won’t continue to say or behave in hurtful ways, but at least you can know that you aren’t alone in your pain and hurt.

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