I first remember identifying with the experience of autism many years ago, when Donna Williams published her book Nobody Nowhere. I read an interview with the author, and I was struck by a moment in which I identified with her response.
As I remember it, the interview took place outdoors in a park under the shade of a large tree. At one point, a crowd of children came into the park, laughing and talking all at once, and running in the direction of Ms. Williams and her interviewer. At that moment, Ms. Williams said something like, “I have to close down now.”
I wasn’t sure what she meant, but it sounded like something I would do. When confronted by too much noise and too many people, I always felt flooded and overwhelmed. In my mind, it felt as though many little doors would click shut in an effort to keep out the visual overload and auditory din. On the outside, I seemed fine, but on the inside, I was working very hard to hear the voice of my own thoughts.
Even the name of her book seemed to describe me; I felt like an exile everywhere. But I said to myself, “You’re being overdramatic. You have a boyfriend, you have a job, you have a college degree, and you get along with people reasonably well. You can’t be autistic.” Those were the days when I thought autistic people were simply locked into their own, strange worlds, unable to communicate or function in society. Donna Williams seemed an exception. I wasn’t in the least exceptional. There was no need for me to read her book.
Some years went by, and then I began to hear about Asperger’s Syndrome. What I learned sounded eerily familiar, but I focused on how well it described my father. I wasn’t ready to look at how well it described me.
More time elapsed. And then, finally, the dam broke. After a half-century of trying to be “normal” (and nearly convincing myself that I’d succeeded), I had a chance meeting with someone who told me, out of the blue, that he had Asperger’s Syndrome. We shared the same love of language, and in some inexplicable way, he seemed like kin. If this man could have Asperger’s Syndrome, I thought, then maybe it wasn’t such a stretch to think that I might have it, too.
So I went on a mission. I started reading voraciously, posting questions in online forums, taking all the online diagnostic tests, and going over all the DSM-IV markers. I researched Asperger’s Syndrome virtually non-stop for two weeks and went over every last piece of information with my incredibly patient husband. The more I read, the more I saw myself reflected in a very clear mirror.
Little by little, my life began to make sense. Asperger’s Syndrome explained so many things that had seemed so odd and mysterious. As hard as I’d tried, I’d never known how to navigate the social world. Make small talk? I could never figure out how—or why. I couldn’t stay in synch with a simple conversation. I’d lose track of what people were saying, and by the time I figured it out and came up with a response, the group would have moved on.
I’ve always felt frightened, overwhelmed, and disoriented in large crowds. Take my daughter to the mall? Forget it. Go contra dancing? Impossible. At every social event, I ended up in the same place: leaning against the wall and looking for someone else who seemed equally dazed. If there were a library in the building, all the better. I’d go there and hide. I mean read.
And then there was eye contact. Why did I have to look away to focus on my thoughts? Why was meeting the eyes of a stranger so powerful and so distracting?
What was the matter with me? I used to wonder. Was I broken?
After two weeks of research, I knew I wasn’t broken. I no longer felt like a jigsaw puzzle with lots of pieces missing. All of the pieces of my life started coming together to form a coherent, recognizable picture. So much of what I read about Asperger’s Syndrome could have been written just for me.
I had found my answers, but I needed verification. I made an appointment for an assessment with an AS specialist. The days before the appointment were filled with almost unbearable anxiety. Would he see past the social skills I had learned? Would he listen to what I told him about my inner experience? Would he believe me?
I needn’t have worried. After observing me, asking me a number of questions, and hearing my husband’s thoughts, the doctor diagnosed me with Asperger’s Syndrome and noted that I had significant sensory integration issues.
I could hardly believe it. For the first time in my life, I felt like I could breathe. When I got back in the car with my husband, I said, “You heard him. He did say I have Asperger’s, right? I didn’t misunderstand, did I?”
My husband just smiled and said, “Yes, that’s what he said. Shall we go out for dinner?”
I was ready to celebrate. I had a name; I was an Aspie. I had a box that finally fit; it was labelled Asperger’s Syndrome. I could cuddle up inside it and claim it as my own. I could begin to forgive myself for all my unrealized dreams, for all my so-called insufficiencies, for all my anxiety, for all my fear, for all my loneliness.
For a while, I was on top of the world. When I got my diagnosis in the mail, I framed it.
And then, the grief hit.
All my life, I had held onto the idea that with a little more perseverance and self-reflection, I’d be able to do anything. That idea had fueled all my hope and all my work. But now I had a neurological condition that was not going to be fixed. I had had this condition all my life. I might be able to work with it. I might be able to mine its strengths. I might learn to manage its weaknesses. But I would not be able to change it.
Most days, I don’t want to change it. I like being me, more than I ever have before. But there is great sadness and struggle in letting go of an idea that has always guided me. Saying goodbye to the old idea of progress is like saying goodbye to a friend who had promised never to leave my side.
But I have to say goodbye in order to begin again.
© 2008 by Rachel Cohen-Rottenberg
Oddly, my experience of reading Donna Williams’ book was just the opposite of yours. I found so little to relate to that it took me another year or more of research and exploration into my childhood to finally choose between yea and nay. I self-diagnosed at close to 70, and the last puzzles of who I was were solved. I had to learn more about the variability in symptoms, and their severity before I could be sure, and the mildness of mine made it very difficult. I’ve stopped blaming myself for deficencies that are neurological rather than psychological and spend more time considering how to work around them.
By the way, the book that was most helpful, because it presented so many viewpoints and experiences, was Women From Another Planet.
Hi Catana,
Good to hear from you. I’m glad you’ve experienced the relief of knowing the condition is neurological rather than psychological. That seems to be so liberating for so many people, especially older people who spent decades berating themselves before understanding the nature of the condition.
Interestingly, I’ve just ordered “Women from Another Planet” and can’t wait to read it. I’ve never read any of Donna Williams’ books. All I know of her was the interview I read perhaps 20 (?) years ago and a little information in Temple Grandin’s “Thinking in Pictures.”
Wow… an accurate summary of many people’s feelings on the Diagnosis. In my case, it was amazing to be able to blame? a condition for a lot of the way I act and feel.
I was already fairly settled with myself though, I’d assumed that it was my hearing loss that made me the way I was. I guess that was why I didn’t get very depressed about it.
Probably the best thing that the diagnosis does for me is give me a way to explain those feelings of depression. I get depressed regularly and I used to feel suicidal but now I can just shrug it off… “that’s the aspergers, that’s not how I really feel”. It doesn’t stop the feeling itself but it does stop me from acting on it.
I hope that you say hello to a new idea of progress because it does exist- or at least, I feel that it must (though I’m no expert.)
When my daughter Dorothy was a baby, she needed constant interaction. I remember thinking “well that’s a sign that she doesn’t have autism.”
I didn’t know then, that people with Aspergers syndrome actually want social contact.
My daughter Dorothy spent the first two years at primary school lonely.
I couldn’t understand it, because at home she’s a lively, happy, nice kid.
She told me that she didn’t know how to approach other children.
Her teacher wondered why Dorothy played alone and didnt attempt to approach other kids. I put it down to that she went to an elite school and that we didn’t fit the mould as a family, so they must be shutting her out.
There’s that Barbra Streisand song “People who need people are the luckiest people in the world.” It makes me feel that there’s something special about Aspergers. There’s a purity there that I can’t put into words.
Yet with the medium of writing, with words we can communicate well with each other, whilst face to face, it’s probably harder.
The grief you feel, I believe is partly that you have been misunderstood all your life, by other people. Your husbands reaction was so nice- the acceptation and celebration of the essence of you. As knowledge over Aspergers grows, there has to be a climate of change.
I hope for a future where people respond positively to Aspergers and autism.
hello Rachel. it is good to read your blog and to absorb the reality of what you are communicating. You are such a positive advocate for “later dx’ed” aspies and i know your writing will have a mjor impact on the lives of those who read it. thank you for being you. Thank you for speaking so eloquently on behalf of all of us.
welcome to a new world…..
I will be sharing your writing with my 88-year-old mother, who is aspie like me but seems to have had a harder time adjusting or adapting. She is chronically depressed, but the more I tell her about Asperger’s, the more relief she seems to feel. It really is a lifting of a most difficult burden. A lifetime of being misunderstood- as Jennifer mentioned- is a lot of pain.
Thanks again!
I have never been diagnosed. When I tried, I was told I have Narcissistic Personality Disorder. :::sigh:::
However, I was around 50 and felt the same way. “There is finally a name for what I am.” I’m not a bitch, I have Asperger’s. Didn’t it feel good to know that?
i’m going through some of your pre-diagnosis anxiety right now. mostly, i feel very right in my self-diagnosis, and the comfort that it had given me is more profound than i can relate fully to even my loving partner. i wonder if they’ll see past my coping, and i don’t want them to take this feeling away. silly, but there.
thanks again,
Ben
Rachel, your story brought me to tears. It has been such a long hard struggle for my husband and me with our daughter who is 14. We adopted her at birth, and think perhaps her biological mother has Asperger’s. Not diagnosed properly at that time. Well, my daughter was born in 1994, the year Asperger’s was included in the DSM.
When things deteriorated rapidly in the early years of elementary school we got a good child psychologist who did not recognize her AS even though she had worked with a boy who was AS. But the psychiatrist she referred us to recognized it pretty quickly. Unfortunately, because her symptoms were not typical in what seemed like significant ways it took me years to understand this.
I do not think of her as a diagnosis, but there are traits that are very hard to deal with. We have her in a pretty good school and that is somewhat comforting. Still adolescence is very hard!
At approx 50, I learned I was ADHD. That too has offered much relief. I add this comment because it is a way I can relate to some of the suffering the people on this thread have shared.
I’m really thankful for your thoughtful and reflective blog!
Thanks for your comments, Mim. Adolescence is difficult for most kids, but for Aspies, it’s especially fraught. It’s so good that your daughter has your support in her struggles.
Are you aware that Aspie girls often present very differently from Aspie boys? The ratio of diagnosed males to females is 4:1, but many people believe that a great number of girls and women are going undiagnosed. Hopefully, this pattern will change, but it may account for why your daughter’s symptoms seemed atypical. It’s really only in the past few years that the researchers have been paying much attention to the differences.
I am reading with tears in my eyes. I always ‘knew’ something was ‘wrong’ with our son, now 35. I asked professionals for their opinions–with one person’s answer that the mother, me, was causing his lack of social and empathatic skills.
Tears…yes…for not knowing what this was (in the 1970′s); not knowing what to do; being blamed for his difficulties; and mostly watching him hurt for 30+ years. Tears also of identification and relief….”that’s it!” Finally …after all these years…..this makes sense. Thank you.
Our son is the one who alerted me to this diagnosis–expressing much relief and joy; it’s even fun listening to him identifying with other Aspies’ traits and experiences. I can just visualize him squealing the tires of the cart in the grocery store, so he can get out of there as quickly as possible!
Some people still dont want to accept this diagnosis… but I am grateful for the relief it is giving him: and the understanding I am receiving from all of you–but especially him!
Jena,
I am so glad that you and your son have the answers you have always sought. It’s quite incredible how many Aspies wandered in the wilderness of being undiagnosed for so long, and how many parents were left not knowing how to help their children. For those of us who are older, it makes the AS diagnosis all the more welcome.
I just read your story of being diagnosed. Your last few paragraphs brought tears to my eyes. You wrote exactly what I have been feeling, but didn’t know how to describe it.
I’m almost 28 years old, and was diagnosed with Asperger’s Syndrome a week ago. It was the most wonderful news I could have heard!
You have a wonderful website, and I look forward to reading more of your experiences. Thank you for sharing your story.
Best of luck as we figure life out!
Becca
Becca: Welcome, fellow Aspie! I’m glad you’re seeing the diagnosis as a positive experience. So many of us do, especially those of us diagnosed as adults. You are not alone!
As a child growing up, I was always a loner. I desperately wanted friends, but had no idea how to make any. I always felt left out, like an outcast, and had trouble relating. I also had certain behaviors that marked me as “different”, thus further increasing my outcast status. In large crowds or group settings, particularly my grade school cafeteria, I would mentally “go somewhere else”, often coinciding with whole body shaking, rocking, or hand flapping, that once or twice teachers mistook for seizures. I always believed something was wrong with me, but never had a name to put with it.
In high school I was diagnosed with depression. That fit part of what I was experiencing, but never really seemed to fit the whole picture.
A couple years ago, I read an article on someone with Aspergers. It was like looking in a mirror. All of his experiences, most of his symptoms, his viwpoints, what others said about him… it all could have been written about me. I started studying everything I could about Aspergers and ASD, and the more I read the more all the odd pieces of the puzzle of my life finally started fitting together.
About a week later, my mom called, out of the blue, and said that a cousin of mine was working with a number of autistic kids, and had been talking to her about their behaviors. She said the more he talked the more familiar they all sounded, like he was describing my actions as a child exactly. Hearing this from her, after not having mentioned any of my findings to her was just the final confirmation I needed.
I still haven’t been “officially” diagnosed, I wouldn’t even know qwhere to start, and I’m not sure what that would change. I’m 30 now, And just barely starting to feel like parts of my life are starting to make sense.
I’m glad to see I’m not the only one who finds this to be an overall positive, yet still has moments of doubt and fear over the whole idea. I still have times of thinking “Well, I have a title now, but it still means there’s something wrong with me, I’m fundamentally broken on some level that can’t be fixed.” but mostly I just realize, this is just a part of who I am, and without it I wouldn’t be me, and mostly I like being me.
Thank you.
Hi Craig,
So glad you found my blog, and so good to see you here! It’s a wonderful thing when the pieces of our lives start coming together. It’s such a relief that there is a name for who we are, and that we can claim it with pride.
Keep posting!
Hi, Rachel. I’ve read your entire blog over the past week, but this is the entry I feel compelled to respond to. My first experience of finally understanding the Asperger influence over my life also came from Donna Williams. While at a friend’s aunt’s cabin, I picked out a copy of Somebody Somewhere to read because I liked the color and my favorite work supervisor at the time shared the author’s name. Although my experience has little in common with Williams’, there was enough that I immediately began outlining a sort of sub-autistic syndrome of social impairment and sensory issues without having ever heard of Asperger syndrome. A few months later I sought help from a local clinic for insomnia and was thrown into investigating bipolar disorder, which led me to a message board where a number of people had both and I was given a name for the syndrome that colored every experience of my life.
My diagnosis wasn’t made official for another three years. At the first formal assessment two months after my clinic visit, I was told I didn’t have bipolar or AS because I was neither high nor low that week (nevermind my extensive family history of mood disorders, two prior suicidal periods, and unexpected sudden weeks of uncharacteristic energy and creativity before the subcutaneous electricity cut out and I fell back into depression) and I reported that in childhood, I had *wanted* to have friends even though I never actually *had* one until one girl persistently befriended me at age 13. (Apparently people with Asperger aren’t supposed to have social desires.) A month after that I had demolished my finances in a hypomanic shopping spree and was homeless for a few days before church friends of an ex-roommate took me in. I was eventually diagnosed with bipolar six months later, but again, I was told I couldn’t possibly have Asperger syndrome, so I dropped it and continued to privately identify with other Aspies outside the psychiatrist’s office. It was only when I received a neuropsych assessment for possible ADD, never mentioning AS at any point, that I was formally diagnosed as Aspie.
A couple of months after my second non-diagnosis, I mentioned Asperger syndrome to my mother. She immediately produced a pile of four books on raising Aspie children that she had purchased in the preceding few years in her attempt to understand my younger brother (since diagnosed with social anxiety and impaired speech, but not AS), as well as an extensive checklist of Asperger traits she had filled in relating to me as a child. That unexpected vindication helped me to feel less crazy when defending my poorly-informed self-diagnosis to my closest friends.
My sensory issues aren’t as extreme as yours. I am half your age. I have not taken my diagnosis as the beginning of a journey to re-experience and understand my life. Still, I find that we share many of the same expressions of AS, and reading about your discoveries has helped me to better understand myself. Thank you.
Stephanie, thank you for telling your story. I’m so glad the diagnoses have gotten straightened out (after your having to take such a circuitous route!) and that you are understanding yourself in deeper ways.