Thursday, June 20, 2013

Explaining/ Disclosing Aspergers/ Being on the Autism Scale

UPDATE 2016: I wrote this post originally before 2012 and added this to my public space at the time. My view points have expanded a bit since then and I believe I have grown in what I feel being autistic is...I no longer use aspergers as much as I do autistic though I interchange them a lot. I still use the term aspie. To me these titles evolve in the learning process and also depending on time. I would also highly recommend some of my more recent posts on Autism.

(My 8 year old- at the time- daughter took this picture of me and I think she did such a good job.)

“When I try to explain my condition to people I feel like they either think I'm making up excuses for myself or look on me as a freak or as some kind of nut case. Sometimes I feel that by telling them I have ASD I'm alienating myself, but then, if I don't tell them I will probably mess up at some stage and they will think I'm strange anyway so I figure its (sic) better to tell them on the whole, especially if I intend to try and pursue any type of friendship. But then at times I feel quite fine about myself, I feel like it's the rest of humanity that has the problem, not me. Sometimes I too, look on myself as a freak and a nut case. But then, I'm sure I'm not, because they always say that if you are nuts you don't know it, and I'm sure I am, so I guess I'm not..... Make sense?”- Richard Rowe -Taken from:

When I found out I had Asperger's Syndrome my close friend from elementary school onward looked at me quietly for a second and said simply, "That makes sense." (We both had studied Asperger's in our College Years of Early Childhood Education years ago, so she knew what I was referring to.) I had also facilitated a women's group over the last two years prior/ during the assessment time and when I explained what Asperger's was to the six ladies I regularly met with... reactions varied. One of the newest members replied, "I can see that about you. Sometimes you are very odd- it makes me laugh, while other times you are intelligent beyond my expectations." (Thank you I think?:) Another, whom I had known closely for seven years was a bit put out. She kept trying to talk me out of my diagnosis - which can be rather insulting. She would say comments like,"Well, that could be anybody." or "Are you sure you are not looking for something?" or "Why do we need labels to be who we are?" Ironically, she has a personality similar to mine. The rest of the gals fell into reactions somewhere in the middle. I am happy to report that more than a year after that explanation not much has changed. I am the same person that I was to them before. Except now when I have sensory overload I can explain it and they do not think I am crazy...or I do not feel as guilty for not being "normal."

However, with non close friends who have not known me for years it is both easier and tougher. Should I explain myself? Will it even help or will it hinder? It's situational. Breaking the news to the in- laws was my hubby's job. (Thank God.) We had a rocky say the least. I suffered through many family gatherings misunderstood (this assessment includes all the extended family on that side that lived around us.) I was also yelled at and had fingers shaking in my face because they thought I was insensitive and destroying the family with my differences. They suffered through my stony silence or my unreadable facial expressions and fast speech...among clumsiness, awkward conversations and reluctance to join activities. It was not a great understanding for either side involved. In the last few years, since the year after my son's first diagnosis, I have felt a slow shift in perspective...for both myself and his parents. Last year I worked up the courage to ask his mother if she would like to read "Aspergirls" by Rudy Simone. She honoured me and read it. While on the phone, after finishing the book, she said to me, "I am so glad I read that book. Dad might read it too. It explains you so well. Everything makes sense now- why you hated playing board games like Taboo or Bowling. How you must have suffered through so many loud family gatherings ect. Thank you for attending them even though you must not have wanted to. At the beginning I though you were just sickly. Now, I know it's just Autism/Aspergers." I had to laugh. That's one way to put it. She went on to tell me how great I was for her son and mother to my children. I told her I appreciated her effort and I could relate to the way she tells stories dramatically and sometimes gets klutzy (an attribute I adore in her.) I think we are becoming friends. It's still awkward, but understanding is the key to any relationship. There is a lot of hurt to overcome for both of us...enough to cover almost eleven I am not expecting immediate reconciliation but it is a glorious start. In this case it was better to explain.* 

With new friends, I find there is a time when the topic naturally comes up. Some people look confused, some judge, but most are fairly great about it. I also have a few friends who do not know that I have any Syndrome at all and I like it that way. I can just be "normal." Thus far they think I am quirky and funny....I get labels like Bohemian, Spiritual, Dramatic, Passionate, Opinionated, Funny, Ice Queen or Artsy. Labels that imply a difference but do not hit the source.  I enjoy that freedom too. It is a welcome break to not have everything sourced back to "Aspergers." 
Ultimately I am just me. 

However, I do not view Asperger's as a label but as an explanation. It was a welcome relief to hear that I fit in with other people- instead of wondering why I seemed to go against the grain of most of society. I was being labelled regardless, it was nice to have a title that threw me in with other people who could understand me. I am unique and although I may share some qualities with those on the Autism scale- I am my own person. NT's  (Neurotypicals/ normally wired people) don't like to be defined by their "normality," even though they share the commonality of not being on the Autism scale. Both scales have unique qualities. There are extreme benefits and extreme low points to Autism as well as to NT life. Aspies do not always want to be defined by their Syndrome. Yet, it is a key to their life. It's a mixture that requires a delicate balance of recognition and acceptance. I needed my diagnosis to enable me to be who I am without it. Make sense? 

Interestingly enough, none of my close friends (minus my bestie) read this blog. Many of them don't enjoy blogging anyway but I did not give this address out to many I know. If they happen upon it - great. However, I wanted to write without worrying about anyone taking offence or having to put a filter up about each experience. Occasionally, I want this blog to shed some light on Aspieness. I find that tough to do if those who love me are reading regularly. They are trying their best to see me as me and only those who crave greater understanding need to read more. I don't want it to be all about me and my quirks. Yet, I write these posts for those out there who need some perspective. For those who are LOOKING for more personal information on the Syndrome, want more understanding or some sort of support. The Aspie/Autistic community is so misunderstood...even by those who live with them. As an Aspie with several years of therapy, books and personal understanding/stories, I feel I can give a different picture. 

I have high empathy which is supposed to be reserved for NTs only. I think empathy in most Aspies is misunderstood. We are more in tune with subtleties of emotion than most know. We simply do not have the tools to express this appropriately at times. The plus side is that the tools can be learned. We have a facial chart for expressions of all kinds on our fridge. My son can point to what he is feeling. He will be more prepared for his future than I ever was because of our teaching. It can be taught. I come across as a paradox. Ice queen and drama queen are two separate labels yet I received them continually. I think it depended on what time you happen to experience me. If it was/is ice, I am usually uncomfortable or overwhelmed or hiding my true opinions. If it's drama I am usually comfortable and excited or irate. I bet many Aspies would differ on this. 

My relationships with NT's are rich and confusing. My hubby teaches me more than anyone and I am lucky that he possess high sensitivity, so he can understand a sliver of my world and interpret correctly on most days. He is my guiding light. I am his shinning star. He finds my quirks refreshing. I find his normality and humour interesting. It works...with a TON of communication, laughter, and information.

Breaking the news to friends and family depends on the relationship. Go with your gut or trust a confidante with discernment powers to hep figure out how to proceed. Most of all, keep the relationship before the issues. In most cases, it's worth it. I get by with a little help from my friends. They are actually the reason I survive so well in an NT world.

*To see posts (Not Autism related) on dealing with and adapting to different family systems (In Laws ect) click HERE.

This is by Samantha and SO good for Aspergirls. I would highly recommend for any who wish to understand women and autism to listen while doing chores or watch during downtime:


Cat said...

you are beautiful!
inside and out
your heart for others is what makes you so
keep being you and trusting all that is within you

love and light dear friend

Kmarie Jones said...

Thank you for being such a supportive friend and listener of the soul. I really appreciate you and that you take the time! XOXO