If you are interested in sharing your insight...
I am penning a follow up to my first book, Pretending to be Normal, for Jessica Kingsley Publishers. I told Sharon I viewed this new book as my grown up version of Pretending. In this book, I can be far more open and revealing as my children are adults and my father (who would have been very distraught to read my underbelly stories) passed away a few short months ago.
I am very interested in any insights, thoughts, topic ideas, etc. any women (or men) would like to see represented in the book. And I promise to never quote anyone without asking permission first, to never steal an idea without giving credit where credit is due, and to never out anyone who wishes not to be discussed. I am not sure to what extent I would use any ideas anyone gives, as I never know exactly what I'll write till my fingers hit the keyboard. But, I would like to try and write about things that have mass appeal. In good Aspie form, I can be, shall I say, single minded about my own issues. lol.
Beyond this, know that whatever I read/share on our network will remain deeply respected and never taken advantage of for any gain!
Hi Liane
I appreciate you asking this question here.
I am interested in you writing on disclosure and identity. As you have already alluded you have made some very significant decisions regarding disclosure of aspects of your life and I think it would be a very important inner dialogue to expose and work through explicitly - for other women to see the workings behind how much of yourself you give away to the rest of the world. I am also interested in your observations/comments on integrating the disparate aspects of personality (masks, personas, characatures) that many autistic/aspie women seem to collect in a life time - how does one present a truer version of onesself. If you are not pretending to be normal anymore - who are you? (rhetorical question)
I am very aware that most of the first person accounts (in english language) of women with ASD are ethnocentric as in they deal with white women's experiences of ASD. It would be interesting if you interviewed women from other cultures and ethnicities and compared your experiences of ASD.
What do you think the future holds for women with ASD in particular - is there anything about what you have learnt privately and publically that has given you a solid sense of how the world will be for you and your daughter as you continue to move through life stages? What about ASD and ageing, retirement - ASD friendly health care and ageing services - inclusion in retirement homes etc.
Ok that's it for now - I am sure I have more but don't want to overwhelm you!
Thanks again,
Katharine
To expand on what Corina said, I think I would be interested in how family dynamics can be affected by not having a diagnosis vs having one. When my own father announced he has AS, I felt freed to explore my own difference, no longer afraid to do so. Before his epiphany, I felt family members treated me as the black sheep, the sort of embarrassing one, the nerdy and tweedy intellectual, who somehow invited ridicule (usually from my dad, who baffled me because he was the most like me). Now I can see it's much more complicated than that, that perhaps even a little envy is involved that I can "be myself" and don't seem afraid to be different. Actually that was always true of me to some extent. What I guess I'm trying to get at is that awareness of AS can change so much, not only about how the family views its own dynamic but about how we view our place in the family.
epiphany, I like that word, because that's what it was like to learn I'm AS. It clarified so much, and I've been able to work out things with my parents and friends. Not everything, because I don't think they fully understand, but it was a big thing to be diagnosed.
stories, stories and more stories.................. there is nothing like a story to relate to.
i think maybe some thing on ASD woman/teenagers that have been sexually abused/raped and PTSD resulting from it and how it manifests in woman/teenagers with ASD.
I think Pretending is a great umbrella to discuss one of the biggest issue (in my view) of AS people "having to" blend in this world.
"Pretending" deals with the ability to be ourself or not. It also indicates that there might be no room for being ourself, which question how our environment see us and accept us. It then questions the relationship between parents and children and the way parents should be with as children. Do children have to stand up to their parents' standard? Can they? Is it healthy? Is it worth it? If we can't be ourselves, can we know ourselves? can we feel supported and understood?
Yet, being able to pretend is also something positive. It means that we can develop strategies and ways to cope and deal with environment in a fashion that allows us to integrate with others, interact and succeed in doing stuff with others. The hard part for AS people is that we need to, at some point or another, interact with other people. So what is the effort put into it? Also if we stretch what it takes to fit in, then where is the limit where we start neglecting ourselves? What kind of signal do we give to ourselves and to others? Then, we can wonder why so many AS people get abused mentally or even physically, because of NT's agendas, and because of lack of understanding of NT people.
Also, I'm thinking that the notion of "pretending" symbolize well the idea that it is hard for AS people to adapt to others. It is often felt as an act and not how AS people truly feel or can be. I regularly realize that there is often an imbalance in relationships between AS and NT people. The challenge is that AS people have trouble adapting to others and so they rather need or request others to adapt to them... which can't always happen... when it doesn't people get upset or suffer.
These are just few thoughts. Please ask me to clarify my points if they aren't perfectly making sense to you.
Hi Liane,
I can honestly say I wish I had found out about tapping much earlier. You can get a free how-to intro - an EFT manual-ette, if you like, and see how you feel about it. If you like it, get back to me, and I am happy to share my story 
I am looking forward to this a lot, not the least of which being that my Biological father is more and more able (thanks partially to my involvement with advo work) to read what I've written about my experience of him, and he has confronted me/verbally assaulted me about some of the VAGUE things I've discussed.
And the thing is, I CAN'T separate out the reality of what I experienced from what I have become enough to be selective enough to keep him from being upset. so I think that seeing your project and contrasting it with your previous work will be very helpful for me.
If I see something I have something to contribute on, I'll try to do so. :)
Savannah Nicole Logsdon-Breakstone
The combination of relief and feeling gutted, when I finally found out, was overwhelming. Scary because I am not normally in touch with my feelings. I was diagnosed at the age of 37 in January 2010. I am sure my father and brother have it too. In the weeks since, my mind has been working overtime putting the pieces of my past together like a jigsaw puzzle and finding that everything fits together perfectly.... I am a Christian and I thank God for this diagnosis. I finally feel like things make sense.
Liane -
I think it would be interesting if you interviewed a few different women about their experience as they discovered that they were AS. It seems that many don't realize that they are on the spectrum until adulthood, and many seem to have similar experiences. I think many look for this particular type of book, and it doesn't exist - yet!
Also, exploring the inner conflict that some of us experience when it comes to pretending in order to not be separated from the "herd" vs. being ourselves in order to not be separated from "self" - if we are lucky enough to know who we are to begin with (if that makes sense).
Another thing that I would love to see explored is people's experience of trauma, depression, etc.. resulting from "pretending". I wonder how many people have secondary diagnoses as a result, at least in part, of not being able to be who they truly are as children. And then, once they are properly diagnosed, if they are able to begin to manage symptoms more effectively. I would love to see people interviewed about this topic.
I don't want to overwhelm you, but those are some thoughts. Thank you for giving us the opportunity to share our thoughts! It's great to read what others are saying as well. Great ideas.
Liane,
There are so many angles to choose from. On my blog you may find many: www.eileenparker.com It's a blog about Aspies and SPD.
I hope this helps!
Eileen.
I would like to hear more information regarding the anxiety and fear that prevents many from enjoying social situations. Having the world know that a diagnosis of Asperger does not mean you do not enjoy social contact but that one enjoys and longs for social connections. The anxiety and fear that is associated with it can detract but acceptance and understanding of the fears has led to an increased effort to participate in social situations.
Epiphany is a great word! My son Nathan has Aspergers. He was first diagnosed with PDD-NOS at age 4. When I began to educate myself on his disorder...it was hard to focus on him because I was being hit with "oh my gosh!" that's me!!!!!!!!! oh my gosh they explains my childhood all the hard times I had wow!!!!!!!!!! and I took an online test with 200 questions and I scored 171 of them that I most likely have Aspergers. and another surprise it told me that I scored 17 out of 20 that I most likely have dyslexia! I always told my mom I thought "she" had dyslexia. she would always get things backwards and such. So maybe she did have it. The more I educated myself I KNEW I had Aspergers and also I think my mom had it. I also think my brother has it but I haven't said anything to him...but he's a genius and had for many year trouble holding down a job and keeping friends. I see some of the traits my son has I remember my brother having when he was little. it's cool and weird at the same time LOL. What I always thought about my mom was that she was a camielion....she could fit into any situation for the person at hand.....I have always been like that myself. with her I looked at it negitively because my sister and I didn't get along but she could somehow balance herself between that. Well......I have a sister in law who never cared for me for the 1st 10 yrs of my marriage. Then she got married and grew up a little and we started becoming friends and she always said no one understood her...blah blah blah (we now know she is bi-polar) that's a mess in itself!!!! gosh...anyway...I thought to myself at that time that I can be her friend and show her I do care. over the years I literally got absorbed into her so to speak...even my husband said I cared more about her than I did him.....and it's his sister. when she wanted something I jumped (willingly) I wanted her happy and I was glad to do it. well the last year or so there's been a lot of changes in my life we rehabbed our house to sell then I moved an hour away to a small town to live next door to my husband's parents. this place is awesome for my son he's thriving here! anyway as I had distance between myself and my sister in law I really began to see just how much she was abusing me verbally and always wanting me to do things for her. The whole family had a huge fight that stemmed from my sister in law's irrational behavior and she wrote us all off. I took that opportunity to keep my distance from her. I am actually healing and more free. and I've learned that I need to watch out for friendships because I don't seem to see the warning signs as anything serious. I don't want to go through that again. I thought I wouldn't find myself in a situation like that as an adult...when I was little I got picked on a lot....I watch Nathan and I can see how he "sticks out" from other kids and I now know that is how I was. Today with the awareness out there Nathan's getting the love and help from his teachers and the other students are nice to him. it's wonderful. I sure hope this make since....I tend to babble LOL I'm learning so much about myself the last couple of years and why I process things they way I do. I don't have to have an official diagnoses to know what's up.
So I would like to hear more about extended family relationships. Also how we pick up traits of others even without realizing it. How we can become what others want and forget ourselves completely. And we seem to do this with a smile and a williing heart.
Thanks for listening.
Sharon
Sharon,
I share many of the same traits you have mentioned. I am a wonderful cameleon too! I identify with many of the Aspie traits and even before my son was diagnosed, I have always been drawn to other Aspies. Do you happen to know where I may find any online tests? I do not see any need for a formal diagnosis but I would like to use more effective coping strategies. I have an 18 year old son with Asperger and a 17 year old son with Down Syndrome and Autism.
Tammy
**Thank you** one and all for these great comments. I'm going to print them out with your names attached to each comment so I don't forget proper thank yous.
Thanks also for trusting me to say something intelligent on the subjects. Writing saves my mind from going poof.
High fives to you all!
Liane
I would be interestedin seeing the twisty turny misdiagnosey aspect of the entire not quite functioning mess. Also, as I have gotten older and have more to juggle (mid 50s now) I find I feel less able to accomodate, and more reactive to stress, wodering if others have the same experience. As a younger mom, I knew both from my education and oservation, that the kids were all a bit "off" the standard mold, and experienced great frustration trying to get most of them early intervention. Now that they are young adults, I am seeing some of them repeat my glitches and not wnt any feedback - they are convinced , quite, that I am evil. They prefer their dad who *never* expected that they would take any responsibility, clean up after selves etc, and certainly never tried to get them any aid or assist.
Pretending to be Normal? What IS normal?
You should describe to your readers what normal is supposed to be so they can better identify with their differences - this is assuming that the appeal is to a predominant autistic audience. However, by doing this, you run the risk of making the readers feel awkward. That's OK, just ensure that the publisher uses a reinforced spine and only print in a durable soft cover. You may also wish to encourage any ill will towards the book itself. Belting a book around may be quite liberating! If your book is to have appeal to a neuro-typical audience (as you say "mass appeal"), ensure that the publisher make it strong enough to support a human head and in a velvet hard cover material with some cushion so I don't awake with a stiff neck. You are correct in stating this is a "grown up version of pretending" if you intend to write this book from the viewpoint of anybody but yourself. Popularity via mass appeal is in essence the hypocrisy of the book. Being yourself by expressing your thoughts does not require approval or popularity, just self-confidence.
Hi Tammy, Tony Attwood has a v good Australian Scale for AS. Check it out here http://www.aspergersyndrome.org/Articles/The-Australian-Scale-for-Asperg...
I think I understand what you're saying. The parent/child relationship is always difficult, but especially when the individuals are from such different worlds- AS and NT. I hope you are finding the support you need. If not, I hope you do... abuse is unacceptable. Please take care of yourself.
Hi Katharine, You are so astute in commenting there are few ethno rich stories about people with ASD/PDDs anywhere. I wish I knew how to reach racially mixed audiences. There is a growing Hispanic awareness and I think women in other countries are beginning to discover and express their AS, but I remain dismayed over the fact these sisters of ours are so under-represented. I just don't know how to find their stories. I am not sure how to network beyond the books which do get some response, but not many for those beyond the white end of America. If you've any ideas on how to reach a wider audience, please share! It's such an imperative issue!
Very interesting thought, Corina. I will see if I can elaborate on it. It will take some soul searching and an honest voice I haven't admitted to on the subject yet, but I think I can add some insight from my perspective. Thanks!
Yea! Story telling is one of my most favorite things in the entire world to do!
I am about finished pretending. I have spent 50 years trying to fit into the round hole, when clearly, I'm a triangle! I will address this realty as best I can- at least from my perspective. The energy it takes to constantly try to mold oneslef into something one is not, is just too stressful and confusing. I understand everyone has to get along and compromise, etc., but when the compromise is too one-sided, things can only slip slide to the bottom of a long sad pool. That's my opinion anyway!
I just started reading about this. Thanks. I'll look into it more!
Those issues will definetly be addressed. My kids are now old enough to hear what their mom (and too many from our community) went through...
It is very hard having to walk on eggs with people. I have had to shield my real thoughts/words from people sometimes. And I don't understand why it has to be that way. My mom says 'The truth may set you free, Liane, but it doesn't set many people free.' Interesting point. Delicate family relationships are hard for everyone, but when we don't speak the same language I wonder if they can ever be easy. Ya know?
It certainly can be overwhelming to finally tap into that inner voice that was likely whispering the fear and frustration of not being understood or heard. Emotions are intoxicating but also v hard for me, too. My father passed away a few months ago and I am experiencing emotions I cannot handle on my own. Having to seek counseling for this depression has been very trying. When you are a logical thinker, like we with AS are, emotions are even harder to grasp and then deal with. I'll see if I can articulate this better, based on the experiences I myself am now going through. Thanks for the idea, Heather!
Yep, that pretending stuff. HARD! Even after I go to a nice small event with a few close friends, I go home and sleep for hours, swallowing migraine meds to get over the headache and tight shoulders that come from the pretending. Even when I don't pretend, I get overwhelmed. Tough circle!
I know many of us, if not all of us past a certain age, have a diagnosis that doesn't quite fit the right root causes. That is especially true for women and something I hadn't thought to include. Thanks for the suggestion- it's real and big!
Thank you Ms. Eileen! I will indeed look at your blog and I love the weighted blankets. When my new website is done, I'd love to put a link up. I have no memory right now. Will you remind me later, to do so? Weighted things are extremely important and so wonderful!
Definitely the relationships with adult children and parents, especially the troubles that can arise between them and potentially abusive situations that can occur from it.
I'm kinda emotionally drained from my own recent fight with my parents (mainly my mom), so I'm not functioning well with the idea thinking right now.
~ Corina
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