Finally Learning The Truth
My all of my life, I knew that I was different. It’s just now that I’m finally learning the truth.
When I went to grade school at the age of 6, I was often left out. Not chosen for teams. I was a very quiet child, so that comes as no great surprise.
I often sat alone with a book. That’s when I became a voracious reader. By staring down at a book, I was not likely to be bothered, or asked questions. Or expected to act in a certain way.
I really wanted to be invisible.
The World Was A Confusing Place:
The world was a confounding place for me. It seemed to me that others had been given a life manual at birth, and I had somehow been skipped over.
How did other people know how to act, how to respond? When to laugh, when to cry? Why a joke was funny? What sarcasm was? How to read others’ facial expressions?
This led me to live in my head much of the time. My way of communicating best was to write my thoughts down. It was my safe place.
Today has been a deal changer for me.
I have had emails wondering what’s wrong. Am I okay? You all know me well.
I have always been pretty transparent here, and in that vein, I am going to tell you what I learned yesterday.
Given The Wrong Diagnoses:
First, I was given various mental illness diagnoses for 30 years. I have gone from town to town, office to office, with an ever growing chart. I have been given psychiatric drugs to help me function in life.
But basically it has not changed my behavior of wanting to live in isolation. Or helped my fear of social situations. Even those with my own family. Maybe especially with my own family.
I have always preferred solitude to being around people.
Four or five years ago, a member of my maternal family, mentioned that she always felt I had Aspergers.
She was around me more than anyone else when we were children. As an educator and principal, she had dealt with a lot of children.
I pushed this notion aside. I’d been given all sorts of psychiatric diagnoses. Why rock the boat?
I was in the middle of trying to end my marriage. There was too much to think about.
But what she said stayed in the back of my mind.
Last week I got up the nerve to take a battery of tests. I was tired of feeling like I lived on one side of a fence, and everyone else, or so it seemed to me, lived on the other side.
And so yesterday I got the results.
I have autism/Asperger’s Syndrome. I say autism because the term “Asperger’s Syndrome” is being done away with. And instead will just fall into the spectrum of autism. Or ASD. Which stands for Autism Spectrum Disorder.
This happens about four times more often with males than females. I am in the minority.
In some ways I am relieved. I finally fit somewhere.
In some ways I am horrified. How did it happen that I came to this point in my life and just now found out this monumental fact? Something so utterly life changing.
Today It Would Have Been Different:
If I was a child in a school system today, it likely would have been picked up early. There would be programs at my disposal. Ways of learning how to deal with the deficits.
And so what ensued was a lifetime of trying to look normal, trying to do and say the right thing at the right time. Trying to fit in.
But I never really did.
Is It Genetic?
Never having met my father, I don’t know much of anything about him. I didn’t know my siblings.
I live my life trying to avoid the things it is hard to tolerate. Noise, crowds, traffic. It is sensory overload for me.
I have worked at jobs for a few months at a time, but my tendency toward compulsiveness and being so concrete made it difficult for me to follow instructions.
I was disturbed and distracted by noises no one else seemed to hear. It just never worked out.
I Felt Like A Failure:
Which always made me feel like such a failure. Other people did it. What was wrong with me? As a result, I became depressed and had no self-confidence.
Living within the confines of my very small world, I avoid groups and social contact. I never attend holiday dinners. And often walk across the street if I see someone I know walking toward me.
What if I do or say the wrong thing? Easier to not be seen at all.
I am happiest when I’m alone with the pupsters, or being on the computer, or dabbling in my gardens.
The Answer To Lifelong Questions:
The things the psychologist said yesterday; it all finally made sense. The things that baffled me about myself, for so many years, have now finally been answered.
The relationships that faded, the friends who went away. My inability to understand why.
So I looked across at this psychologist who compiled this data of me, and I said: “So all this time that I have been labeled with these other diagnoses, are you saying it was untrue?”
“That’s right,” he said. “You do not have those other things. You never did.”
Spring is just around the corner. I will be taking photos of my beloved outdoor birds. Happily tending my container gardens and being out in the fresh air.
Therefore I can finally forgive myself for not being normal. For being different.
Perhaps the word “normal” is simply a misnomer anyway.
We all have a story. This is mine. A life of missteps. Bad decisions. Broken and strained relationships. A fractious relationship with my adult children.
I wrote this because there are probably many other people out there, people you know and possibly love, who are walking around with labels. And maybe they aren’t the correct ones. Maybe that person is even you.
Don’t live underneath the umbrella of a label if you believe it to be untrue. I don’t care how many years down the road you have carried it on your back.
You all have been there for me through the years. Through all the things that have happened, you have always expressed your concern.
That means a lot to me. Accepting me as I am.
And for that I thank you.
There is sunshine outside. I am going to go outside and stand in its warmth.
Brenda I can relate to this about learning the truth. My son was always different and we had tested him but nothing ever conclusive until he was much older. When we finally found out it was such a relief to us. We finally had a handle on the situation and he was able to breath a sign of relief at knowing. I personally believe there is no such thing as normal. We are all different, we all have different learning styles, different ways of seeing the world, and different ways of reacting to it. It is society that poaces some of us inside the circle of what is normal and what is not. You are an inspiration!!
I'm so touched by your writing. I have been reading about your journey here, your diagnosis of autism/Aspergers. I commented on your other articles about this hitting home – my grown niece (she is 36) being on the autism spectrum. I think you have done a good job building a life that finally really suits you – I do so enjoy your blog, love your decorating and your adorable little dogs. Now, with this diagnosis and the knowledge you will gain from it, I think you will be able to understand and begin to build a better relationship with your kids – I hope maybe they can see your blog, your writing about this, it might help them to understand, too. You are doing great, I so admire your honesty and I wish you all the best!
Thank you for your frank honesty. I am so glad you are finally able to put a name to your condition and able to understand more about yourself. This resonated with me, as I have labeled myself a 'victim' most of my life. I know this has to change….I am not a label, anymore than you are….we can find peace. I wish you peace and serenity.
Brenda,I think it is a good to know. I'm also sorry that they are getting rid of the diagnosis of Asperger's because it really isn't the same as Austism. I like how it has been considered a spectrum. They already miss so many girls as is. Sensory Processing Disorder which was called Sensory Disintegration is another one. With children sometimes it is hard to pinpoint exactly what, if anything, is wrong especially when they are highly intelligent. There is this idea that they are so smart they will compensate. Anxiety, high intelligence, Asperger's, Sensory Processing Disorder, OCD, and ADHD have so much overlap. It is not uncommon to have Asperger's with Anxiety. There is all what some call the Highly Sensitive Person, but that is not a medical label as far as I know. I wish experts could definitively help all the time. Parents sometimes have to say it looks like this, and then deal with it in that way, but that makes it very hard on the person who doesn't understand why they are the way they are. Sometimes having a name is helpful. It takes a lot of love and reassurance to combat a world that thinks everyone should blend in. xoxo
People would say to me: "But you're obviously intelligent. I don't understand why you get lost all the time and cannot follow directions." This would frustrate me so and make me feel ashamed. Why couldn't I follow directions, be able to remember what someone told me to do, not be able to work at a job because I was unable to recall and learn instructions, draw attention to myself when I heard noises even though the last thing I want is to draw attention to myself? Why, I would ask myself, can I not adapt?
I've only just discovered you thru the Over 40 group, but I feel as though I am able to know you through your very powerful words. I have a 32 year old son who's an Aspie. His struggles are your struggles. From helping him to understand the world thru his eyes, I grew as a person. His struggles broke my heart, but his strength and his courage to push past his challenges have made me the proudest mom ever. I am thrilled at the prospect that this diagnosis will give you some clarity. You clearly have many talents that bring you joy and I am happy to be able to ride along on your journey. Just remember that you are so wonderfully you- with all the differences great things have come to you! Your recently acquired knowledge is a stepping stone to a new realization of your self. I wish you a peaceful heart and that you can let go of the thoughts about yourself that weighed you down. New horizons, indeed! Keep doing the things you love! You have much more to share with us. Much more. 🙂
I am so sorry for your struggles and your confusion in defining yourself. I do understand how hard it can be to feel different than everyone else around you and feel like they got a copy of the how-to manual and you didn't. I'm so glad that you have a diagnosis now and while it won't change anything about you, it will help how you feel about yourself and approach your life now. My prayers are with you. Thank you for sharing.
Now I can give up on looking for that life manual. No one got one. It wasn't that I was left out. I just have more difficulty figuring out how to be around people.
I hope your diagnosis opens up new horizons for you, Brenda. My son (now 30) probably would get an ASD diagnosis if he were in elementary school today. But back in the early 90s, he was diagnosed with attention deficit disorder, which did not seem at all accurate. In middle school he was diagnosed with depression, which certainly did seem accurate — anyone would be depressed after experiencing his challenges in the classroom. Also, his father and I had gotten divorced when he was only four years old, and I know that was so stressful for him. Oh, and he also was diagnosed with a vision focusing problem, which didn't help either! It probably is never just one issue that causes the challenges. Today, he has job and shares an apartment. He is awkward in one-on-one situations, but handles groups well. He just texted that he's going to a cookout, which is great. We finally have sunny weather, and everyone is getting outside. I hope you are enjoying blue skies and a sense of relief!
I have the opposite problem. I can be one-on-one with relative ease. But put me in a group with people talking and I can't block anything out and hear just one person. So I am rarely to be found in a group situation.
Dear Brenda, I know you are a genius writer and i so enjoy reading your blog daily! I actually savor the evening hours to sit and read yours and so love your colorful decorating. You are inspiring in so many ways and I feel blessed to have found your blog! I pray your every day will only be more peacful. I know you will now read a wealth of material on your diagnosis and know I am so happy for you now have understanding.Keep your head held high looking at the beautiful skies and birds each day and smile and enjoy your sweet little garden. Blessings and the family time is so rewarding to see your grandson grow, so sweet! 🙂
Now I have to work on accepting how I am, rather than fighting it. Fighting it was exhausting and humiliating.
I am so happy for you, Brenda.( I think you are so normal, just a very smart person when it comes to colors and decorating, gardening and other things.) YEA for you!!
I knew I had a creative mind. But I didn't have a "problem-solving" mind. That I got easily frustrated with simple things. And I just couldn't figure out why.
What a relief it must be to have a diagnosis. I'm not familiar with Aspbergers, but I do know that your strength and talent lies in your writing which is compelling to read. Build on that as an outlet…someone mentioned you writing a book. Your story and journey is important and I'm sure others agree.
The diagnosis told me I was not stupid. That there was a reason I saw and did things differently. Whereas others could do things I seemed unable to do, I judged myself harshly.
Brenda, I cannot find which email you sent your home phone number to. Please, try again to [email protected]. Thank you so much.
I resent it.
You should take a deep breath , and be very proud of yourself. You are very courageous here and personally to take such important steps and then to share them with your online world.
I am proud of my Brother who lives with Schizoid-affective disorder which was not property diagnosed until he was in his 30's. He leads a full independent life with the right meds and even has learned some basic socialization skills now. The most important part of his illness to me is that he is happy in life and well cared for. As I wish for you now that you have the right doctor and the correct diagnosis. its a day to celebrate where all that you questioned in your life has come to this point for a reason so you can say, yes this is who I am and know yourself better. Be aware of your limits and understand your needs are valid . Be proud of yourself for all you have endured alone without a proper diagnosis. . You are a women to be admired and I admire you. its the beginning of a new journey of understanding yourself and building your life with the gentle care you need.
I'm glad your brother was diagnosed and getting the help he needs. I don't know if it's worse not to be diagnosed or to be diagnosed with the wrong thing. I just shudder to think of all the meds I've taken over 30 years time.
As you continue in your soul's journey, know that you have so many friends and admirers.
I can see that. And I am overwhelmingly happy to have all of you.
Now that you have some answers, I'm hoping you can finally be happy with the person you are. You are certainly a very talented writer. Although I'm fairly new to your blog, I always find your blog to be so well written.
Well, thank you for the wonderful compliment!
Oh Brenda, I have gotten behind on my blog reading, having just completed our move and my husband's retirement. My heart breaks for your years of pain, but I'm so happy you finally have some answers! My 9 year old granddaughter was diagnosed with "aspects of autism" but not enough to be placed on the ASD spectrum. One of them was sensory. I watched her at 2 and 3 years old be tortured by noise and crowds. She would literally cover her ears and scream from the onslaught while we adults tried desperately to find a quiet safe place to take her. It was torturous! Thankfully she is not as sensitive as she's gotten older for whatever reason, and she has learned says to cope or remove herself from those situations. I have no idea what is available for adults but I pray you can find resources to help you. As a child she qualified for many services through the state. You are absolutely my favorite blogger and have always inspired me. In fact, when the dust settles I'm hoping to revive my little blog because you've made me believe I can do it.
Of course you can do it. If I can do it, you can do it. I have not found much in the way of resources for adults. Not so far.
Brenda, I can almost feel the weight lifted off your shoulders in this post. I think you've finally unlocked the mystery of what makes you tick, and this is a bright new beginning for you!
At least now, when I wonder which direction to go, I know where the answers lie.
I have always wondered why you struggled so much when you were such a gifted writer that you didn't go out and find a job for your considerable talents. Now I understand. You should write a book on your life. I think you could make a good living out of your writing. You can do it at home. I have always thought it strange some newspaper hadn't grabbed you up to write a daily column for them. Many of us aren't good with words but you are. And we all have someone we know that is viewed "not normal" whatever that is. I wish you peace and happiness with your children and grandchildren.
In my younger adult years, I had chances, back when newspapers were big and there internet wasn't an issue, but my lack of social skills kept me from attempting them. I would love to write a weekly online column, and have checked several avenues. But I was never contacted by them.
I'm sitting here with tears in my eyes. I need to talk with you so desperately. Recently, my beautiful 14 year old daughter revealed to me that she cannot read the emotions of the other students at school. She often has to ask someone else what's going on if a friend is distraught, elated, or displaying other strong emotion. She revealed many other struggles to me and I have been at a loss where to turn. She is very aware she is different. I have to rush out this morning but would very much like to communicate with you if possible. I can't wait to check this comment section when I get back. I do believe there may be a family component here as well. I struggle with a few peculiarities my self. I just can't believe that in you just describing yourself I find solace. My daughter is not alone.
I emailed you my home phone number.
That was a powerful. It was very interesting to read and so brave of you to write. Thanks.
Aren't you a teacher, Magali? If so, I imagine you see a lot of this type thing in your students.
Oh Brenda I am so glad you have an answer. My nephew has Aspergers and you are right, now they get identified so young and we know what we are dealing with. Hope this gives you some peace and freedom to just live knowing you now have some answers.
I just feel that I am so far behind those children who are diagnosed at an early age, and have intervention. But, it is what it is.
What a gift you have been given, the gift of knowledge! There IS light at the end of your long, dark, tunnel. Your journey is just beginning.
It took a long time to get here! But yes, I think it is.
Wow Brenda..I wish you the best with all the new information you will be learning about how this affects you now and has for all of your life..at last you will begin to understand you..
What's a relief is I can maybe stop trying to hide all the things I just don't know how to do. Like figure out how to get somewhere. Don't give me directions. It won't help. Don't tell me turn east, west, north or south. It won't help. One day I literally got lost four blocks from my home. And kept driving in circles. The more circles I made, the more confused I got!
Better to know than not know. My favorite student of all time has ASD. He is brilliant and making his way in the world. Now that you know you will be able to breathe deeply and learn more about ASD. This is something you will cope well with because you already have. Lucky us for being able to read your blog!
Lucky me for having such loyal and wonderful readers!
Look at all the people you have touched! Incredible!
I love your open and honest words, hard but powerful.
Like Dayle said, knowledge is powerful – GO GIRL!
I'm standing up and applauding you!
Thank you for your support. I learned at an early age that I could not touch people in person. I don't have that talent. But I knew I could touch people with written words. And so my hope is that touching people makes a difference in someone's life.
I'm glad that you have some answers, but I'm sorry that you suffered with wrong diagnosis all these years. Thank you for sharing your struggles with us. I think that all of us feel like we don't fit in sometimes.
Sharing struggles helps us all find our way, I think.
Oh Brenda, I hope that the knowing brings you peace and explanation. Along with that, a hope that understanding and learning more will help you deal with family relationships in a new way that brings comfort and closeness to you and your family members. I know you do not want sympathy… but I am sorry about your struggles as a child. Too much pain for one dear life. You are strong and have come a long way, without much help from parents or a spouse. Just look at this outpouring of comments – – you are well loved! Happy for you in this new chapter… Thank you for sharing and do keep us posted! I am certain that your sharing has already helped others… ps – who of us feels "normal?" Depends on the day! 😉 love and prayers, ~julie
You're right. I don't want sympathy, and I don't take it that way from you. I just want to share my story in the hope it helps someone else.
You are to be commended for your bravery in sharing your story, I have no doubt that countless others will be helped by hearing it. We have a nephew with Asperger's although he does not function as well as you appear to. You're are a beautiful soul and I hope that you do not let this stop you from persevering. I imagine it is a comfort to finally have a name to put on what you have felt your entire life. Please know that while I seldom comment Ido enjoy reading your posts and hope you will continue to share your life with us.
It's not necessary to comment. That you read is certainly wonderful enough.
it is amazing to get a correct diagnosis after all these years I'm sure and now that you no you can understand. You write so well, I do enjoy your blog and the wide variety of topics that you cover.
I guess some of us gravitate to math or science, and I gravitated at a very early age to words. Became fixated on them. And still am.
Wow, Brenda, just Wow! I admire your courage to go and have the tests, get a diagnosis, and then face the implications of it. Others have mentioned Temple Grandin. PBS did a program about her some time ago. And, she wrote an article for Time magazine found in the October 7, 2013, issue called "What's Right with the Autistic Mind." Maybe your local library can access that issue for you to read. I only know about her because our 46-year old son believes he is autistic and wanted us to watch the PBS program when it aired. After reading your post today, I'm thinking he may be right as his social experiences in life have been similar to yours. He, too, is very smart–graduated magna cum laude from college, finds life very difficult, and lives alone. Relief is priceless and, as others have said, knowledge is power. I hope you will continue to share your story with us, your faithful readers.
What a blessing to have this knowledge and be able to understand your life more clearly. I'm sure, too , that having a real diagnosis will help in rebuilding the connections with your family. It is easier to work on those relationships once everyone is on the same page with the same understanding. I wish you every success.
I do not always comment (shame on me) but I read your blog every day and always enjoy your perspective. We do not all have to be the same; if we were what a boring world this would be.
You don't have to comment. I don't expect that. When you do, I appreciate it. That you read is certainly enough.
Brenda, I have not been around all of Blogland recently, but I have finally subscribed agsin since you no longer show up in my reader. I am happy you finally have found pieces to the ouzzle. Keeping you in my thoughts.
Now that some of the pieces fit, I am given renewed hope.
I'm so glad to hear that you finally know this! When you were young, schools and doctors didn't really know about that unless you had severe symptoms. I know a lot about this diagnosis because my 13 yr old son is in the spectrum. He is a loner and uses the computer A Lot! He is very good in school. He doesn't like change. He has sensory issues. He is a homebody. I worry about him starting high school in the future. That's when kids get even more social! He will stand out more then (not fitting in). My son has a mild case though. I think with you understanding this diagnosis you will be better able to live your life more fully. It's nothing to be ashamed of and you're definitely not alone!
Your son has a strong and loving mother. That will go a long ways in helping him to cope. I imagine he has strong interests or hobbies. That I would nurture, because he will feel more adept at things others might not know much about. That will give him a bit of self-confidence in his abilities. I did fairly well until about the 5th grade. Then it was downhill from there. Teachers took an interest in my ability to write and some worked with me before school. I didn't do well in other subjects. I was fixated on words.
Yes, "whatever you are is good enough"! I haven't commented in a long time but I do keep up with you and the pupsters. I'm glad you have a definitive diagnosis. My dear friend, Beth, was diagnosed with Asperger's as a child. She has a Master's degree in music. Her mother heads a local advocacy program for children diagnosed with autism/aspergers. She recently brought Temple Grandin to town to address
those who lived/worked with children and adults. Temple later met with a group of farmers interested in her techniques used with animals. If you aren't already familiar with Temple, I think you'll find her interesting and inspiring.
I learned about Temple yesterday and immediately ordered a book by her. I wonder if there is an advocacy group here? Thing is, you can often find support groups. But how about people to help guide you through the maze?
You are one amazing lady Brenda! You are a seeker of truth…and now you can move forward. For that I am happy for you. We are all different in so many ways, and most of us don't know why we are a little this or a little that…it must be such a relief to know! Hope you enjoyed the warmth and the sunshine! 😉
I did. I tilted my face up toward the sun, and I said thank you. I listened to the birds, chirping more and singing, around me than just a week or so ago. The dogs enjoyed it too. They seem to know that I have found some peace. They are calmer too.
How lovely to find out that you are normal – as we all are, in the end. To find that there was a reason for the way you felt, to find that you are not alone, to find that the way you act is normal for you. Because I am normal (for me), and all of your readers are normal too! Good luck as you take this journey – it seems that the road is rising to meet your feet now, instead of you having to climb and climb so slowly along it.
I love how you worded that: that the road is rising to meet my feet. I think it will be an easier journey. And one I will share in the hopes that it helps someone or many someones.
I'm glad you finally know why you feel the way you do… When I was reading this, it sounded as though you were writing about my life… We seem to have so much in common… I have been diagnosed with depression and anxiety disorder… Even though I have been on medication for these, I just never seem like I fit anywhere… I shy away from people and spend time with my dogs and other pets… It is with them that I am truely happy… How did you go about finding someone to test you ??? The doctors I have seen in the past just kind of gloss over the way I feel and want to hand me another pill… Thank you so much for writing this article… Please know you are not alone… You have so many people who care for you…
Well, I never would have thought to even mention it had it not been for the cousin. So I broached the idea with this new psychiatrist (insurance changed the old one), and I told her I needed to know why my mother and grandmother were the way they were. That I didn't want to feel that my mother simply traded me for money (along with my father) and then didn't look back. It might not be the reason, but it would be balm for my soul. So she said her colleague, the psychologist she works with, does the testing. It is not cheap, and I fervently hope insurance helps to pay for it. But I needed it for my own peace of mind. And so I asked for it, she found it indicative of what was going on, and the testing was ordered. So just ask. Don't just accept what they tell you in a 10-15 minute med check. They don't have the time to delve into things during that time. Take charge and do the asking yourself.
Fiquei feliz por você,
I don't know what you said. But I'm sure it was in support. And I thank you.
I am glad that you do finally know the truth now, dear Brenda. It must have been so hard for you, and now maybe things will make more sense at last, and hopefully get easier too.
It does make sense, and thus it will be easier to figure out where to go from here. Before, the diagnoses were complicated and overlapped upon one another, and I was just handed bottles of medicine.
I am so glad that you have some sort of answer now! I am also glad that you live in this day and age of the Internet now where you communicate, look us in the eyes squarely, empathize, share, love, help etc. without having the burden of having to be in the room with all of us making too much noise 🙂 I wonder if many cloistered nuns and hermits of days gone by were a bit like this with such a syndrome that turned them towards quiet and solitude and there would have been many others as well that did not choose a religious life yet we have books and poetry from them. I imagine that there have been many quiet geniuses over the years like this, and you 🙂
That's an interesting concept about the nuns. Perhaps there is merit in that thought. There is Bill Gates, said the psychologist. Quite a few comedians. And I understand that perfectly. Comedians don't really interact, if you watch them. They simply go into their "spiel."
'Detour to Discovery'
For my dear friend, Brenda
You wandered around your 5 decade life,
and wondered about all the 'whys' of it,
losing yourself in its streets of strife,
but now arriving at the 'Ah…', of it,
you are finally here, in the sunshine,
enlightened, rays of joy radiating
from your smiling face. Welcome.
Oh Poppy, that's so very beautiful!
Knowledge is priceless. I admire your courage, and your many talents.
Now I have to convince myself that whatever I am, is good enough.
I have many friends who I believe are on the Asberger's spectrum. In the past, they would just have been labeled "quirky".
I am glad you know more about yourself and will give yourself credit for creating a life that works for you.
Lost a lot of people along the way. They didn't understand. Heck, how could they? Neither did I.
Knowledge is power. I'm so glad you have an answer.
Some answers are hard to hear. But the answers I've previously been given were even harder to swallow, so it made this one much easier to accept.
So very many people are misdiagnosed, it's shocking! I believe I read recently it's as many as 1 in 3. That's totally unacceptable. These are people's lives for heavens sake!
After reading this, I let out a big exhale. I imagine you have too?! What an unbelievable relief this must be, and gives new meaning to the saying 'the first day of the rest of your life'.
Yes, it does. As hard as it is to hear what he told me, I knew it finally all fit. It wasn't a symptom here and a symptom there and so we're going to give you x number of pills to deal with it. As it's been my whole life.
When I started to read this post I just knew you were going to say you learned you were autistic. The way you explained things starting back when you were just a child it just clicked! I've worked with many autistic children. There are varying degrees of autism. I believe there are many misdiagnosed cases. Which is scary that wrong medications are given to people. I've always been haunted by that fear. So much has been learned since you were a child but there still a long way to go. You've come a long way baby! I'm sure you'll be learning a lot more about Brenda. Thank you for your honesty. I'm sure this post could help someone in a way you may never even know.
I sure hope it does!
You are such a strong woman, caring and sharing with us. Beautiful pictures, adoring pups and a love of the color red and gardens. And the ability to make a home wherever you are. Happy for you
I do have strengths that I readily acknowledge. They just aren't the everyday things people do like working a job and driving through horrendous traffic and all that many women do each and every day. What I considered until now "normal things."
Bless you Brenda, you are such a courageous woman. And bless that Dr. What wonderful things for him to say. You have touched me and others in many ways that you will never know. Happy days from now on.
At least more insightful days, which should lead to greater happiness. When I learn to stop judging myself against the accomplishments of others around me.
Everyone in this world has something… What I see in you from here is a talented writer and a beautiful photographer: a sensitive and intelligent woman… I'm happy for you that you will begin to understand why you feel the way you do… this knowledge will shine a light on your life past and future. Thanks for sharing your story… I know it will help you and others 🙂
I hope so. That's why I wrote it. If someone else had written it, and I had read it, I would have seen myself in it. I hope others do. I don't want them to have this go on any longer than it has to.
Brenda, I'm glad you've found out some answers for your questions. I'm sure you feel as if a weight were lifted since a name has been put to how you have felt for so long. How nice of Kay to go with you to the doctor and I'll be praying he can really help you Are any of us really normal? Probably not and like you've said, we all have a story. You are so much stronger than you give yourself credit.
Be a sweetie,
I guess I don't really have a measuring stick for strength. I've always focused on the deficits that kept me from going out into the world and being like "other people." Because criticism always seems louder.
Brenda, I am just feeling sick reading this. All those years of angst and upset….all that pain and anxiety you have lived with…..and no one, until now, has diagnosed you correctly. I am so happy that you finally have answers although that does NOT erase fhte pain and trauma of the things you were labeled with in the past. Had you been a child today, like you said, you would have been put into programs that would have helped you and had a totally different life, most likely. That being said, I do believe the journeys that we take are the ones that are meant to be ours…and you have done well in spite of what was handed to you, God bless you….you can breathe easy….you have some answers. xo Diana
Thank you, Diana. Your comments are always so heartfelt.
This is so beautifully written. It seems to me that many health care providers are attached to labels–makes it neat and easy for them. But labels can break a life. Your post will save them.
Oh, coming from you, I am so very touched.
You know that I am with you all the way, my friend. You are a very brave woman. xo Laura
And so are you, Laura. I've always admired your strength and common sense.
O, Brenda, I'm so happy that you finally got a correct diagnosis! You know you will always have our support and admiration for the wonderful, caring friend that you are. Having ASD will not change that at all. You are a talented woman who is capable of so much. I'm always amazed at the things you get done with your ankle problems and all, all the while turning out wonderful blog posts daily! Now, enjoy the relief you must feel as that big load of wondering has been lifted from your shoulders. Hugs, Cheryl
Relief. What a beautiful word. I am still who I am. But relieved.
So happy for you that you finally have a diagnosis, now you know what you're dealing with. I think with any "illness" or problem, it's much easier to know what you are up against. I think (from years of reading your blog) you will deal with it like you do so many things, you will learn everything there is to learn about it and you will succeed and thrive despite having some obstacles. Wishing you peace in your understanding of all you have been through. I don't think the phrase "Today is the first day of the rest of your life" has ever been more apropos. Blessings to you, Brenda!
I agree, Deb! Very, very apropos.
I love you for your honesty and your openness. Knowledge is power and I'm so happy you have answers now. I am sure this post will open doors for so many people. Thank you Brenda and yes we are all behind you, supporting you every step of the way.,
I know you are. If you have knowledge of something, then you can communicate it to others. I've been thinking about you. Figure you've been moving.
I am happy you are happy knowing what it is you have. I can relate to Asperger's, since our Grandson, Brian has it. He was 10 when it was diagnosed.. I've never been one for labels of any kind, but know it is important to you Would this change the meds you are on? I hope this path will bring you comfort.
I have left a voicemail for the doctor asking about the meds. I don't like labels, because I've lived with them for 30 years. But this gave me some closure about my mother. And that's one of the things that drove me to get this done.
Brenda, i, too, am one of those who has read your blog for years but rarely commented. i am so glad for this definitive diagnosis. How miserable to go through life knowing something was not right but not finding out what it is. Now you can go forward with knowledge which, as someone else has said, is power. Look at how much you have accomplished in spite of always feeling kind of "out of it"! Just think what you will accomplish now! God bless you in your new journey to the rest of your life!
I want to just wake up in the morning, every morning, and say to myself: You are good enough.
Brenda this is such a happy day. I would echo what so many have written to you today.
Joy, that's kind of what I feel. Joy. Like my sentence has been commuted or thrown out.
Brenda, I am doing a happy dance for you. Finally finding out something like this is amazing. It explains so much for you and I hope gives you confidence to just be you and do the best you can. I hope your daughters will respond well to this. My Niece just found out her 3 yr old is Autistic, there is so much early help now days that can help the child and the parents cope. I have often thought my oldest might be on the spectrum, but she has found a path that seems to work for her. I'm excited for you to learn more about Aspergers and to share this journey with you.
Thanks Linda. We have to support one another in this blogging journey. And you have always supported me.
…you are so amazing! this was amazing … my bipolar brain and heart thank you for this … everyone's brains and hearts thank you for this! … your journey is nothing short of amazing. it doesn't matter when you "found out," and there is no shame in how long it took, or what you might perceive to be "oh gosh, now that explains a lot of things!" –which yes, it will help you to explain a lot of things, but it will help you not know yourself so much better, honoring yourself, never mind the new label/realization … we live this life in pieces and parts, stops and starts, stages, but omg gosh when it gels! let your heart swell now! honor, beautiful spectacular, i'm not kidding AMAZING YOU! we all hear you, just the way you are! i'm sure i won't be the first or last to say that i'm so happy to have your words, your creativity, your force in my own life. you've given tons, now let the world shine on you! let this all take hold. 🙂
Wow! What more could I possibly ask for than that kind of support! Thank you!
Brenda, like all your other "on-line" friends, I am over the moon happy that you finally have the correct diagnosis! I have both a niece and nephew that are on the spectrum – and they are both quite different individuals.
I always save your blog "last" for my reading pleasure every single day. I with I lived closer and not on the East Coast! Like you, I find comfort in being alone – and never feel lonely (my husband who was my best friend passed away at the young age of 46). I have two energetic almost one year old kittens that keep me company and are the joy of my life. I have a great family – at 60, I'm the oldest of seven. I'm most comfortable spending time with them. Although I still work full time, no one at work knows the real me – I conveniently hid behind my happy cheerful (fake) self. But that's OK – I have my home and "roommates" to come home to every day, my brother and his family live downstairs from me and all is good.
Like others have said, keep being "Brenda" – we all had great affection for you before, and this diagnosis will not change the way we feel about you one whit!
Oh, how sweet of you! I never feel lonely either.
I am so sad for you Brenda, not that you have this diagnosis, but that it has taken you so long. I truly hope that you can now get some help and support – if you need and/or want that – and can get to grips with things. I cannot imagine how this has affected you or how you feel and would not profess to, but I do understand how important it is to know the situation and to be able to face it and I hope that you can now do this. The fact that you have taken this step to have the tests and deal with the outcome and to share it here is totally amazing and I am so impressed with you for doing that!!! Go forth with great gusto and joy and know that whatever happens you are you and that is just wonderful!!!!! xx
Well, one thing about it, you can't really be anyone else or play roles. It just isn't in me. I blurt out the truth when I should keep quiet. I've never understood the subtle ways of doing things. I don't understand chitchat. Sarcasm often flies right over my head. And if I'm told a joke, I never have figured out when to laugh, because I never get it.
Glad you have some answers for questions you have had for a very long time. As a Sped. Teacher I know a little about ASD and I wish you the best in finding out more and more. I too think knowledge is power and important and you will not only keep growing, but continuing to be BRENDA.
Oh, I need all the info I can get. Wonderful to find out that I wasn't just merely stupid for not being able to figure out what everyone else seemed to know and do so effortlessly.
Huge, huge cyber hugs going out to you ~ Thank the universe you've finally found your answer! Mine was a different diagnosis, but finally learning the truth opened entire new worlds for me, and let the light back in to my life.
There are 'net Aspie support groups out there; find one you are comfortable with. It always helps to know you are not the only one feeling the way you do.
You GO, girl!
And I imagine all of them want to communicate via computer, so I'll feel right at home.
I doubt if few things are worse than knowing you are different, but not knowing why. Now that you finally have the correct diagnosis you can begin healing and receive the proper treatment for your condition. I think Asperger's is more common than we realize and I am so relieved that your search is over. You have truly found your voice through blogging and I hope your new diagnosis helps you in your relationships with your family as well. Like many others have mentioned it is the beginning of a new day for you, Brenda. Wishing you the best!
Like the doctor said yesterday, I found my voice through blogging. Such a wonderful thing, he said, the internet. I had a way of communicating that I finally felt at ease with.
I am so happy for you that you decided to pursue this in more depth. You must feel an amazing sense of relief. I'm also thankful that you found a doctor willing to work w/you, that is fantastic. And a big thank you to Kay for taking you and being there to support you. You are truly an amazing woman, and I will anxiously look forward to your journey as you walk a new path in life.
I've always wanted to help others. I am just not very good at a lot of things. But I've always had a desire to help others. To help make a difference for them.
Oh Brenda, so glad you finally have an answer that makes sense! I think you are right though, the word "normal" is simply a misnomer anyway, as you said we all have a story and it's always a blessing to have some answers to the why's we ask. So happy for you sweet friend, you are a special lady and I'm so glad to be one of your many blogging buddies!
It was an understatement when he said: "How are you going to feel, do you think, when you walk out of here and 30 years of labels have just fallen away?"
Knowledge is power. My grandson is autistic and he is a delight to me, not necessarily to the rest of the world. But I will tell you that the more I watch him, the more I think that we ALL have some tendencies that are "not normal", that we are all on the autism spectrum somewhere. Everyone of us suffers from something that holds us back, some lack, percieved or real, that worries us. But the real issue is learning to live a loving, meaningful life, however we can. I think it is wonderful that you now have a diagnosis, and you can read and learn to understand wno you are. But in the end, all that really matters is that you have, by being honest and not trying to sugar coat the facts,brought a lot of comfort to a lot of people. You're special, warts and all! Thank you.
Gotta love those old warts! The most important thing to me is a relationship with my children.
What a relief, I'm sure mixed with some sadness, to now know the "why" of all those feelings and reactions you have had for all your life. I have worked with many kids who have been diagnosed on the autism spectrum and can I just tell you that I find them delightful? 🙂 I have learned so much by seeing the world in a different way through their eyes and now I also understand why you have such a great eye for how to frame your pictures for your blog with such precision and beauty. 🙂 I see that as a talent and a strength. 🙂
Well, thank you. Some things I fixate on, as I have to have them right. Other things it doesn't matter. I really LOOK at things. Outside. The insides of flowers. The texture of insect wings. I guess it's not always bad to be the "odd ball."
I know next to nothing about this, but this is good news that you are finally getting answers.
I am praying for you and hope you find as much happiness as this ole life can give to you.
I knew next to nothing too. But am learning. And will get my life somewhat figured out.
Don't know if there is scientific evidence to support this, but I have always heard that people with Asperger's relate to children quite well. Sounds logical that you could relate beautifully to your grandson because he has no expectations of "how you should act." He just loves you because he can sense you love him. Nourish that relationship and you both will be happy. Others just need to begin to understand. You don't have to "act" normal – you are normal – whatever that is!!!
That makes perfect sense. I don't have to walk on eggshells around Andrew.
Good on you for having the courage to seek further answers. I have no idea but realise people are different and am trying to teach my young children to except the differences in others. All the best to you.
Thank you for your well wishes! Much appreciated.
Brenda, I hope that you will read some books that were written by Temple Grandin. She is an amazing scientist with autism, and growing up was not easy for her. Claire Dane even won a Golden Globe for portraying her in a movie. There is even a children's/young adult's biography about her, Temple Grandin: How the Girl Who Loved Cows Embraced Autism and Changed the World, that I share with children in school. I hope that you will have more understanding and acceptance as you continue your journey with this new knowlege.
I just discovered her while googling books on this topic. I will certainly read her!
You have accomplished more than most in a life time; you truly are amazing. I don't think anyone is fully normal. Who defines normal anyway? I am happy you have found the TRUTH! The truth shall always set us free in one way or the other. Hugs to you!
I remember when my girls were kids. They used to say: Why can't you be normal like other mothers?
Always. I will always continue to share it. It is one thing I know how to do without being afraid. And that's writing.
Brenda, there are so many parallels to your story in my own life and with my mother. She is 85 and I have come to believe that she is also on the spectrum. I'm not saying I find that to be a disorder of any kind. I just think it is another variation of human existence. It explains so much to me about her, and the relationship she has with everyone around her. I think it's great that you have this information in your hands now. It will help you navigate your path as you move forward in life. And it will also help the people who know and love you. How courageous you are. I love reading about your journey and I hope you will continue to share it.
I am so thankful you have your answers!! And you know the truth! The truth is best! And yes…knowledge is power. By the way …..we all like you just the way you are and hope you know you are accepted as YOU! WE HOPE YOU SHARE YOUR JOURNEY WITH US
I will share my journey. In the hopes someone like me will start theirs.
All great ideas! I can takes things in smaller doses. I'm so tired of apologizing. When in doubt of what to do, I always just apologize. Even if I'm not sure what I'm apologizing for.
I look forward to hearing from you.
Where you go from here is accepting who you are and LOVING yourself for who you are. Realize that in many ways, Aspergers makes you special. As a lover of awkward things and people, you are awesome in my book! Play to your strengths and don't apologize for who you are. Limit your relationships to those that are most important to you and work on those. Get together in small groups with family or one on one. Suggest activities that take place where it is not crowded and noisy. Send a good link to family and friends with information on Aspergers. Chances are, they will have a lot of "Aha! That's why she does that!" moments. Embrace who you are and be thankful for who you are. You are BRENDA, a woman who likes quiet activities and is a talented writer, among other things. Everything works together for good. Always. In the end.
You are so right, Kim. Knowledge is the ultimate power. I guess all that reading was preparing me for the research I need to do to find balance in my life. And do right by those that I have hurt, who have loved me.
Brenda, as others have said, I too am happy for you. Knowledge is power and there are so many great resources and support groups out there. I hope they help you to find acceptance and happiness, my friend.
I visit your blog daily but rarely comment. I am so happy that you find a true diagnosis. That said "normal" is a small pinpoint on the center of a chart and most of us range somewhere outside of that dot. It just depends how far outside.
There is normal. And there is "normal." I guess if it interferes with your daily life, and causes others to have issues with you, then you're pretty far outside the range of normal and need to address it.
You are amazing, Dear Brenda. How wonderful to have an accurate diagnosis. I hope you are able to sort out and get off meds that have no application to your health and find new freedom – joy even – in coming to terms with the REAL Brenda…
I just left a message at the psychiatrist's office asking if I need to make an appointment to discuss these medications I currently take, in lieu of what we now know.
I have a grown daughter that is undiagnosed, but I think she has Asperger's. She's a highly creative person and extremely sensitive. I've had to learn to handle her gently, but that's a good thing. I think her father may have had it, thinking back.
Congrats on getting answers to the questions you've had all your life! That's quite an accomplishment!
Btw, I've loved your blog for years, but am not a big commenter on it. I was disappointed back when you wanted to add other posters as I so enjoyed only your posts. They were/are always so personal and your pics are always awesome. I left for awhile, thinking your blog was going commercial, but came back recently. Glad I did! Please continue to be yourself because that's why we come here!
I found out pretty quickly that my readers did not want contributors, so I let that go almost immediately. I get emails of writers wanting to contribute almost every day. I email back that my readers don't seem to like others writing on my blog. And so that is how it shall be. I'm so glad you came back. I do have to have ads to help augment my meager income. But I will never "go commercial." I'm far too emotionally invested in this blog.
I agree. It is better to know. As you've already stated, you can begin to live your life on you own terms knowing what feels best for you and allowing that to be the happiness in a contented life. I'm happy for you.
It was hard to allow myself happiness, for I felt like such a failure. As a mother, as a person who could not go out and work in the world, as a woman who did not make good decisions when it came to men, as a wife who stayed far beyond a time when she should have left. It was not safe there. But the outside world did not seem safe either. I felt trapped by indecision.
My son Bryan has Aspergers. He is turning 18 today. I have cried reading your post.
I read about Aspergers all the time, but hearing your personal thoughts is so much different than simply reading about it. This is how my son feels.
It took 16 years to get a diagnosis for my son. I figured out through much research what it was… finally. The symptoms can be so sudle that it is hard to put your finger on the symptoms. Unfortunately, the modern day school system was not good for him. they never thought a thing about it. He was bullied relentlessly. He wound up in the emergency room after being attacked by several boys at school. This was in a small town. I now know three young men with Aspergers, including him. I have learned a lot about it.
If you have any questions… you can reach me through my blog tldeliberately.blogspot.com.
I need to have you lead me into this world with your knowledge. I shall be getting in touch with you. I have many questions. One of which is: where do I go from here?
I always feel it's better to know than to wonder. Once you know, you can deal with things, so I am happy that you finally have your answer. Somehow, this is going to make many things better…just knowing. Enjoy the sunshine! Perhaps you'll feel it in a different way today!
I felt the warmth of the sunshine feeling as though: This is the first day of the rest of my life. It is the first day I woke up withe the knowledge that autism is part of my brain structure. And I'm thankful to be here. I think the FIRST TIME I am really thankful to be here.
I am crying here, not from sorrow but from happiness that you finally know, have finally found yourself. You've probably read this Derek Walcott poem but it is one I pasted in the front of my inspiration notebook, and I broke down and sobbed with relief till exhausted when I first read it. It might not be relevant to you at all but in case it is:
"The time will come
when, with elation,
you will greet yourself arriving
at your own door, in your own mirror,
and each will smile at the other's welcome,
and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you
all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,
the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life."
Derek Walcott, from Collected Poems 1948-1984
That time came for me–actually it happens again and again–and I hope, dear friend, that it does for you as this important new truth reveals more and more to you of you.
I am not familiar with this, but I'm crying now as well. Thank you for sharing it with me!
I don't know if Dewena will read my reply – but this is one of my favorite poems. 🙂
I had a wonderful Pilates mat teacher who was a ballerina in the San Francisco ballet and drove 1.5 hour twice a week to teach this class. She opened her first class reading this poem and she made copies for all of us. To this day I read it when I need to be reminded to put myself first and accept myself, disabilities and all. Thanks for sharing it.
Brenda, I'm happy that it all begins to make sense.
Too bad it took 58 years huh?
I think it's a huge step that you finally have a correct diagnosis. Though remember – you are Brenda. You are unique and wonderful in who you are. Autism does not define you; it's something you simply have, like brown hair or blue eyes. I think you should be proud of yourself for all you have done on your own in your life. Now forgive yourself, work on accepting yourself, hold your head high and continue working on those relationships in your family.
Thanks Melanie. Excellent advice. You're a great friend to have.
you have done so much and accomplished so much even against what you now knoow was great adversity.. I am so proud of you and you should be proud also.
and look at you NOW, making your own way in this world , still succeeding and winning at Life when many with less issues would have long ago given up…. labels you say?? well I got a lable for ya.. Brenda is One Gusty Broad with True Grit running in every vein of her body!!!
love ya bunches
Thank you, dear friend! Putting one foot in front of the other, though scary, was all I knew to do.
I'm happy for you, Brenda. I think the worst part is not knowing, no matter what the situation is, and now that you know, I can imagine that there's been a huge weight lifted.
Yes, years of feeling like a complete failure, that is slipping off my shoulders. Yet I still will have trouble navigating a way to make my way in this world. No school for that.
How did your finding out about your brother affect your relationship with him? His relationship with the family? I would be curious to know this. Because it is the loved ones who suffer so much.
I am so glad you have an answer, Brenda. I need to read the book in the last comment. My brother just found out a couple of years ago, in his late 40s, that he was dealing with this, too. It made me understand him in a whole new way. I hope it will give you more understanding into your life…xo
Oh, Brenda, I don't know if I should be, but I'm happy for you to have a concrete description for what you've suffered over your lifetime; one that will allow you to research what's been going on and why. And also to find out you're not alone, and that there are so many others who feel the things you feel and have dealt with what you've had to deal with. You must still be reeling with this new information. I hope what you learn eventually gives you some comfort and a more peaceful life.
I was afraid when I wrote this that people would feel like they had to say they were sorry. There is no reason to be sorry. It is just figuring out what was wrong all along, and that's a good thing. I wanted people to be enlightened, so it could be applied to others. Or to themselves. It answers so many questions I didn't even know I had.
I recently read an enthralling memoir, "Look Me in the Eye: My Life with Asperger's" by John Elder Robison. It was a very enlightening book which provided a glimpse into how his unique mind works. So, I feel I may understand in a small way what life is like for you. I am so grateful that you finally have the correct diagnosis, Brenda. Thinking of you… xo
I think I will look for that book. Knowing is the first step, I suppose.
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