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On Writing Pretending to be Normal and Public Disclosure

10/15/2014

9 Comments

 
Public disclosure of your Autism Diagnosis via Aspie.com
How did you share?
Pretending to be Normal New Edition Aspie.comExpanded Version
Loads of years ago I wrote the first edition of Pretending to be Normal: Living with Asperger’s Syndrome. Timing is everything, and at that time, there were few autobiographies on this end of the autism spectrum and even fewer written by females. We had Donna Williams and Temple Grandin as our wonderful mentors and role models writing their thoughts and sharing their experiences, and of course we had super groups of outstanding women who shared their lives through early social media outlets. On the heels of my daughter’s ASD diagnosis from the University of Kansas, I felt compelled to share my own struggles with Asperger syndrome. I wasn’t diagnosed at the time, but my daughter’s struggles resonated deeply with me and with my father. Her life was mirroring ours. With few resources to support a child with ASD in our area, we moved to a state that was more progressive in its attention toward ASD and a whole new life began for my daughter, my elderly father and myself. What started on the yellow brick road from Kansas, turned into a path of turns and steep hills and potholes and one-way streets with no end…until the world began to reach out and help people with mild autism. And then, we breathed more freely and walked more certainly.  With help from others, we achieved the best we could and we are happy and glad for it.

 Lucky 

Not everyone is as fortunate as my family was; yet another reason why I write and speak on ASD. Everyone deserves every single bit of assistance they can get for whatever challenges they face. And yet, our community as a whole is still disconnected from minority groups, females, adults and the elderly, not to mention people in countries were individuals beyond the norm are too often ignored if not damned or locked away. As hard as it is to be diagnosed today, imagine how hard it was for adults to get diagnosed before Attwood, and Simon Baron-Cohen, Francesca Happe’, Uta Frith and Judith Gould, Fred Volkmar and Ami Klin, Brenda Smith-Myles and Cathy Pratt (and the list goes on…gosh, I hate leaving so many wonderful people out of this short post) came to the scene in the late 90’s. Rather than an ASD diagnosis, people like me were typically labeled with all sorts of things like anxiety disorder, depression, neurosis, psychosis or even dissociative disorder. Of course, we may have an ASD and one or more comorbid challenges, but the ASD was rarely recognized. My diagnosis was serendipitous. While at an ASA conference, I ran into Tony Attwood who was new in his position as our guardian saint and rather open to working with individuals on the spectrum when he was in the states. We struck up a forever friendship, he wrote the forward to Pretending, we do presentations together, and he officially diagnosed me as an adult with AS. I am one lucky, lucky lady. And I am struck with depression when I realize there remain so many who are struggling so hard, twenty years later. 



Pretending has a nice sales record and its second edition is now out. I put a lovely cover of my horse and I on the cover because horses are at the core of my day job and because they are my special interest.   I hope this new edition, with a new forward by Attwood and expanded information by me, provides some hope and answers to people who are in our club and for people who are kind enough to help us.

Sharing your diagnosis is big.

I disclosed publically. It began organically and simply as a result of my wanting to share the struggles and dreams I had on behalf of my daughter. It grew to something that included the complications that face adults with no diagnosis and the particular nuances that arrest the development and security of females. I’d like to say my disclosure was easy and lovely. It was not. It was fraught with fright, curious glares and lots of talking behind my back. But I fought through this disarray, firm in my belief that an ASD diagnosis can be a precious thing. I’m not naive to its challenges. I’m not happy with everything my ASD brings to my life. I would change a few things about my neurobiological challenges, if I could. But overall, I am who I am and I am not broken or unable, not bad nor a castoff.  I’m a member of a community filled with genius originality, wonderful kindness, dependable friendships, and honest voices. I wouldn’t leave my community for any other. 

Who inspired you?

I’m me. Who are you? I road a rollercoaster during my early disclosure and am still on a tilt-a-whirl twenty years later! Coming out now or then wasn't easy. More and more people are writing about sharing their diagnosis. Jen, Margo , and Haley  are a few of my brave friends who have been generous enough to share theirs. Do their stories resonate with you? Have you written something? Is there a book or blogs or public sharing in your future or your now? Please Please share a link in the comments. 


9 Comments
Kmarie link
10/16/2014 01:37:45 am

My son was diagnosed at four for Aspergers Syndrome. I researched everything. Tony Attwood and your book was the first I read and I saw myself so much. Then Aspergirls came out by Rudy Simone and I wept through and highlighted it all because every bit of it was me. Temple Grandin was next...I talked to it with my cognitive therapist, gave him so resources and we agreed I must have Aspergers too. My daughter also seems to have it but was only diagnosed with OCD anxiety and Sensory Overload.
I can not get an official diagnosis. I have tried. I have reached out to Tony Attwood with no response ( which is understandable as now he is so busy) and anyone I really could...In Canada it is only covered if you have a psychiatrist do the diagnosis. I have been to three and NONE of them knew anything about autism...especially autism in women and just wanted to drug me for ADD and Bipolar which both do not fully resonate with me...Just the overlapping traits.
I have mostly come to peace with the fact that I don't have an official diagnosis because i KNOW who I am. But every once in awhile I get asked who diagnosed me (mostly in the medical community) and it's a moment I wish I did.
I recognized Aspie traits in a blog friend I met down in the States and sent her ASpergirls...she was struggling because she was diagnosed as Bipolar but none of the meds were working...a year later she got her official diagnosis as an Aspie/ Autism spectrum with my help and she is thriving at school and gets aid when she needs it. That was both wonderful for me and hard...because I have been 6 years without anything official...

So that's my story...thank you for sharing yours. I love your book! It was the only book I read at the time in which you were an Aspie and HAD children. I loved that because I had three before the age of 24 so it was helpful to read those chapters!:) THANK YOU. I am so glad I found your blog a couple months ago:)

Reply
Marguerite Comeau link
10/16/2014 06:15:04 pm

Dear KMarie,

Although you've come to peace with who you are, don't give up on an official Dx just yet. I had tried for years to find someone in Canada as well, to no avail. Liane Willey gave me several contacts, and after endless emailing back and forth I finally found my saving grace. Tania Marshall, a world leading specialist in Asperger's in females diagnoses women via Skype. You will have to write an autobiography of 3-4 pages and you will have a 4 hour appt with her (usually divided in two separate days). This is the email to book an assessment: admin@centreforautism.com.au

I wish you the best of luck along the rest of your journey :)

Margo

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Kmarie
10/17/2014 02:08:20 am

Thanks Margo! I already tried writing her but she did not write me back the second time...also there was the problem of payment...its the same as here in Canada and we are below the poverty line...I am looking for someone in Canada who is covered by health care...unfortunately that is only psychiatrists. Or someone who does it half cost ( I could probably scrape up two grand) but most cost 5-6 grand here for a psychologist report for an adult and then its usually misdiagnose!:)
Thank you so much for your suggestion Margo! I really appreciate it and I love hearing others success stories!:)

Kmarie
10/17/2014 02:23:53 am

P.S. I just checked my correspondences with Miss Marshall...I actually could afford her price now if it is the same ( around one grand) but she never emailed me back after she quoted me because I asked if there could be a discounted rate or exchange for research stories ect...because when I emailed her two years ago we were scraping our pennies. Now I could afford her rate probably but I felt foolish when I had no response and I don't think I could work with that. I do appreciate that she took the time to write the first time and i have her book AspienGirl for my daughter and she loves it...So I am sure she is a good person who simply forgot but with previous scars of being overlooked as a child or labelled quirky and weird, silence is a thing I do not deal with well...I'd rather just be told no politely and to email back if I ever get in a better place ect. Silence is my personal issue I suppose, and I don't think I could email her again...plus at that time I wasn't sure if it was legit because I did not know of her yet in the Autistic community and I was not sure if someone was taking me for my money (I am easily gullible.) Now I know better but I feel that door has closed in her case. I am sure though that she is a great door for many others and I hope anyone reading my comment will learn from my mistakes and still try her and know she is legitimate!:)

Kmarie link
10/16/2014 02:25:04 am

I forgot to mention in that my other youngest son had testing done and he qualified for everything ( sensory processing, anxiety, Executive Functioning issues, Perception issues, auditory processing, delayed speech, high ADD...) but because he was one point over what he "should be" in the social tests they gave him all those labels without the Autism. He is just different in the way he presents..He is overly social in the sense that he thinks as soon as he meets someone that they are his best friend. He cries if he thinks he will never see them again..which is the opposite of my Other aspie guy who always prefers to not engage unless he has to. I think there are so many misconceptions and the diagnosing process is just not up to par yet. Also the empathy is very misunderstood. My children and I are ALL empathetic and every aspie I have now met are too. I am sure - just like in personality- there are a few Autistics who are not just like there are some NT's that are not, but in general I think we feel too much so thus shut down.
I am glad that you are sharing your story and pairing up with Tony Attwood. He really changed my life! When my son was four and we were looking for answers all it took was his book and I KNEW:) And then it was confirmed! Our life is so much richer now that we work with our way of Being and feel belonging finally! I homeschool them and we thrive on most days ( you can see my blog for more if you are interested.)
Thanks for asking to comment...I was too shy before because you were an author I admired and I did not want to take up your time..but since you asked:)
Another blog I love is Musings of An ASpie by Cynthia Kim. You may enjoy it too:)

Reply
Liane Holliday Willey link
11/23/2014 09:04:07 am

Hi! I too like Musings of an ASpie. So much good stuff by so many smart and lovely women (and guys) online. Regards getting a dx as an adult- the new DSM 5 is making it harder for those beyond the school years to be dx. By the time we are out of school, we tend to be 'too close to normal', or too well versed at hiding our difficulties. If I didn't have an AS diagnosis before the new DSM 5 (we can keep the dx if we already had it), then I'd try to get a speech pragmatic and language disorder dx. And/or a sensory integration dysfunction dx. It's super hard to qualify for AS these days. Stupid, but it's a reality, at least in the US. I'd suggest doing the things the counselors/teachers suggest for your son and keep reading all you can from your community of Aspies. Welcome and thanks for sharing!!

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MLarkin
12/3/2014 02:06:21 am

I just tried to get my 17-year-old diagnosed, but she didn't qualify under the current diagnosis for deficits of non-verbal communication or developing and maintaining relationships. Instead they said she had a social anxiety disorder. They could not explain why she finds it difficult to read other's expressions or know how they are feeling or maintain eye contact. They thought she was very interested in her peers, but she prefers the company of a handful of friends, all of whom are gifted. She finds being in a large public high school overwhelming. She is highly gifted and has learned cognitively how to manage most social situations, but sometimes it's too exhausting. She identifies with much of what she has read about Aperger's and was looking for a sense of belonging. I told her she should just look for support in the AS community, but it's not the same for her without a diagnosis. Is there a point in seeking a second opinion or is the DSM-5 too restrictive?

Andy Gainey link
10/16/2014 01:43:39 pm

I learned of Asperger's and recognized its potential applicability to myself eight years ago. My mom even got me a copy of Pretending to be Normal. Unfortunately, I didn't follow through with this near-awareness at the time. (Not at all to imply any deficiency of your book; I just wasn't ready psychologically; wasn't mature enough to accept and embrace this new knowledge.)


Thankfully I found myself in a much better position this summer to explore the subject again. With the support of an excellent counselor, and more serious research this time (Pretending and Dr. Attwood's Complete Guide were the first two books I eagerly consumed), I've had a whole new world of self-understanding open up to me.


My decision to be open and public about my autism has been mostly due to two reasons. The first is simply that I want to feel comfortable being myself, and it feels nearly impossible to do that when so many of my private thoughts involve an awareness of my internal autistic traits, but publicly I'm withholding those thoughts. Even if my public behavior doesn't change one bit, merely being open about this awareness is such a relief psychologically.


But I also have to acknowledge how thankful I am for authors and speakers such as yourself and those you named or wish you had room to name. I have benefited so much from all the excellent research, collaboration, speaking, and writing that has given me valuable knowledge, encouragement, and practical advice. And thus I'm compelled to try to do likewise, contribute my own small bit of value to that dialog. (Though I have to fight self-doubt every step of the way, if I am to be so bold as to believe that I have anything worthwhile to add.)


To that end, I've begun blogging (slowly) about my personal journey and insights (http://andy.experilous.com/). I want to echo Kmarie's recommendation for Musings of an Aspie (http://musingsofanaspie.com/), as her blogs were of such quality that they have been the chief motivating factor that inspired me to pursue that same route.


Of course, not everyone I interact with reads my personal website, so "open and public" doesn't necessarily mean everyone knows about my autism. The important people in my life do, but I'm still learning when and how to talk about it with others. But with time (and again, the advice and insights of others), I have no doubt I'll figure it out well enough.


Finally, if anyone reading this is in the Kansas City area, allow me to shamelessly plug my counselor Darlene Kirtley. (http://oasiscounseling.co/) And for everyone regardless of location, I strongly recommend and wish you the best in finding a professional counselor, life coach, or similar who really respects and appreciates you as an individual, not just as a bullet pointed list of symptoms in need of a bullet pointed list of corresponding treatments and drugs.

Reply
Maureen link
5/21/2015 02:55:47 am

I was diagnosed with Asperger's very late, at age 41. In the decades prior to that my life had completely derailed. I know now that this was largely due to my undiagnosed ASD and everything that came with it. Nearly four years after my diagnosis I am still struggling to find my footing.

The first book I ever read about Asperger's in women was Aspergirls by Rudy Simone, a book I still hold very dearly. I read it while I was going through the diagnostic process and it hit home so much that I could only read a chapter at a time, sometimes not even that. I will forever by grateful to her for giving a name to what I have been suffering for so many painful years: selective mutism.

Apart from your first book Liane (the second one wasn't out at the time), a book by a Dutch writer had a lasting impact on me. Written by Henny Struik, 'Niet ongevoelig' (= Not without feelings/not unsensitive) to me still is one of the best books ever written about autism in females. I know there was talk of an English translation of the book some time ago, and I really hope that will happen one day, for I believe so many more people could benefit from the book the way that I did (and continue to do).

As for myself, I have always been a writer, from a very early age onwards. However, as my life started to disintegrate, so did my writing. Fortunately I am now slowly but steadily refinding my writing abilities. I started a Twitter account (https://twitter.com/AnythingMaureen), and I plan to start blogging about my experiences in life within the next few weeks. I also have plans for several books and I am working towards to becoming a speaker at autism related events as well as volunteering at the local autism centre.

Finding out more about Asperger's by reading more about it, connecting with other people with ASD and finally feeling like there actually are others that go through the same things in life has helped me a great deal. I hope to be able to give at least some of that back.

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