How did you share?
Expanded 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.
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.
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