Mom prepares me,
but nothing can inoculate fear colored blue
masked in lights, shining brightly.
The terror seeps through.
Awareness disguised as tolerance is not the same as love.
An uneasy embrace may appear affectionate,
but can feel worse than a slap.
Words said with anger are not kind,
no matter what each word means by itself.
Look kindly
choose many feelings,
but please do not choose blue.
#WalkinRed2015
Freedom, Fear And Questions concerning Autism
Barking in the terrible terror that comes with being something so feared and hated.
Daring tremendous love for those who fear.
Healing tears for those who are in brutish pain.
Freedom from hurtful words about cures for being a part of the human race.
Help me so I can communicate.
Give me an education so I can learn.
Treat me as you want others to treat you.
Cheer me on.
Remind me of all I am capable of and focus on what hinders you, but don’t hurt me because I do not experience this world as you do.
We can learn from each other, but learning requires an open and willing mind. Too many have given us fear instead of hope.
Which, when, why, who, where – we ask.
We matter.
We are all capable of being kinder, more compassionate, more loving to others and ourselves.
*A word from Ariane – Emma became very upset while writing this and began banging the table with her fists and then bit herself. When I asked if she was able to continue, she typed, “No. No more. No more.” – I asked her if she was okay with me adding this here. She typed, “yes.”
Emma ~ 2015
The other week I was present for the following typed exchange by two people. Both are Autistic and both cannot use spoken language to communicate. (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)
Layla: You have an extremely loud stomp. (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)
Jerry: Is that a guess or are you certain?
Layla: If you tried to hide it then you gave away the secret.
Jerry: That is what I am behaving like on some days but proud I am not.
Layla: I heard it all and was curious and wanted to give help.
Jerry: Really do you believe that I am not evil? (J. turns his head so he is staring down at the table. His body is completely still. It is a noticeable change from the way he usually sits while having a conversation with Layla.)
Layla: Evil is not this and best to forgive yourself.
Jerry: Thank you for not judging me.
Layla: I only ask for the same respect.
Jerry: The deal is on.
I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood. Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment. As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.
As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality. Jerry expressed profound shame and upset and Layla responded with identification and deep compassion.
Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night. I wrote about that ‘here.’ One of the things she typed was: “Pounding terror is all that remains.” More recently she wrote, “The raging screams in my head are starving and want to consume me.”
Raging screams… Pounding terror…
August, 2014
Emma typed that she wanted to write – “How about a story about what we attach ourselves to when we are most afraid.”
“In no particular place that anyone has ever heard of, there lived a girl who was friendly and loved to laugh. She had a body like any other girl her age, but it moved in ways that were unusual. This caused people to stare and even made some think that she wanted their mean looks and comments.
“Do you know anyone who likes to be the focus of such hurtful and nasty attention?
“No. I do not think anyone enjoys being made fun of.
“The fun is a question I do not have an answer to. Laughter is pure when it hurts no one.”
By Emma Zurcher-Long
August, 2014
Posted in Autism, Bullying, Parenting
Tagged afraid, autistic, bullying, creative writing, difference, fear, joy, laughter, making fun, non-fluent speaker, non-speaking, writing
“No one knows how to help us.” This was what I once said to my husband. It was many years ago. So many, I no longer remember the year. Along with that realization was this one – “We are in this alone.” And while, at the time, that thought terrified me, it was the beginning of finding another way. It was the moment when I realized all these people we were looking to for guidance, didn’t know what was best for our daughter, even when they believed they did.
In the beginning we were told how fortunate we were, our daughter was “mild” we were told and if we followed their advice – an aggressive implementation of ABA, Speech Therapy and Occupational Therapy – she would be in a regular classroom by the time she entered kindergarten. She was still two years old when she was diagnosed and we knew nothing about autism. We did as we were told. We were assured she would “skyrocket.” We fought to increase the hours of therapy, we went to the team meetings, we took notes, we learned how to “play” with her using ABA’s techniques, we monitored her and kept charts. We filled notebooks with our observations and we waited for her to “skyrocket.”
When she turned three we enrolled her in an ABA based pre-school. By the end of that school year I no longer believed all that I was being told. The therapists were no longer assuring us she would “skyrocket.” Now words like “red flag” were being used to describe her behavior. She had “behaviors” and these were being pinpointed and noted with alarming frequency. We were getting reports of non-compliance, an inability to “use her words” as though she was being defiant and then she began to self-injure. No one understood why. Everyone was baffled.
And now, so many years later, I look back on those years and it all seems so understandable. They say hind sight is 20/20, that looking back we can easily understand that which was once incomprehensible. I understand now. We didn’t appreciate what was going on. We didn’t think we understood our child, and for the most part we didn’t and we kept looking to others to explain her to us. The explanations they gave us, we believed. We thought, since we didn’t understand and they seemed sure that they did, they must be right. It took several more years for me to realize they didn’t and they didn’t know how to help us or her either. When the methods they believed in didn’t do what they believed should and would happen, they blamed us and they blamed her.
Emma continues to remind me that “regret is not needed” and she’s right. I am working hard on that one. I cannot describe someone else’s experience, I can only write about mine. This was mine. As the mother of a daughter who was once believed “mild” and later “moderate” and finally “moderate to severe” on autism’s vast spectrum, we have learned a great deal. And while many may not derive any solace in what I’m about to say, I would have. No one can predict what life holds for your two, three, four, five, six or seven-year old child. No one can predict another’s future, there are too many variables.
That my daughter has some spoken language is, and was, the single biggest red herring for those who meet her. It never occurred to us that all that speech therapy, focusing on spoken language, would ultimately be unhelpful. I knew nothing of AAC (Augmentative and Alternative Communication) devices or methods and as spoken language seemed to me to be the ideal, the idea of her using something else honestly never crossed my mind. Why would I encourage her to use something else to communicate if she could speak? When, after years of speech therapy focusing on spoken language, she still couldn’t have a conversation with us, our answer was to try more, push harder and it would come.
So many people ask what we would have done, knowing all we know now. This is a question that is specific to my daughter, but I know there are other children who are similar as I’ve met so many of them. I would not have waited so long to begin using other forms of communication. In fact, this would have been the thing I would have concentrated on right away. There is no evidence that using an AAC device will have a negative effect on spoken language acquisition, in fact there are studies showing the opposite is likely to be true. Had my daughter been able to communicate at an earlier age, many things would have changed. The most important one being that we would have understood much earlier all that she knew and understood. This may strike some as a little thing, but I can assure you, had we realized this early on, had we believed this right away, it would have changed every single decision we then made. Not to mention the massive reduction in our stress, anxiety and fear.
There is so much we are learning and still have to learn, but we are no longer alone. We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter. And of course, our daughter, Emma whose patience, love, wisdom and endless compassion is teaching us more than any.
One year after the diagnosis
Posted in ABA, Autism, Parenting
Tagged AAC, Autism, autism experts, autistic, communication, communication methods, diagnosis, fear, high functioning, language, low functioning, mild autism, moderate autism, non-speaking, Parenting, severe autism, Stress, worry, writing
*This was what my wonderful husband, Richard, wrote as a comment on my post the other day. I asked him if I could make it a post all on its own. He gave me permission…
“Pain is inevitable, suffering is optional.”
There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.
But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude” I was yelled at. Punished. Spanked. Slapped in the face. Called awful names. Verbally abused. Degraded. Humiliated. And that happened nearly every day of my life until I left home at the age of eighteen.
My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.
Me? I didn’t really matter.
I waited a long time before becoming a parent. For years I swore I would never have children, perhaps because I was afraid I might behave like my own parents. And no child deserved that. When I met Ariane, something shifted monumentally in me, and I was suddenly eager to be a dad. I was 40 years old. Maybe I was finally emotionally mature enough to handle the enormous responsibility of parenting. I was ready to put someone else’s needs ahead of my own. Because for me, that’s what parenting is about. Service. My children don’t exist to fulfill my expectations, or make me happy. They exist in order to experience life and fulfill their destinies.
It is indeed hard to be a parent. I empathize and sympathize with all the parents who feel overwhelmed, who don’t have the resources or support to cope well with these tremendous responsibilities. I know life is hard for you. But trust me, no matter how hard you think you have it, your children have it harder. They sense your frustration, your discontent, your fear and panic, your anger and rage, your sadness and depression and hopelessness.
And quite likely, they feel themselves to be responsible. Maybe they are even told they are responsible. They feel guilt and shame. They try harder to make you happy. To not be so upset with them. Because they have learned–deep, deep inside–that they are “the problem.”
I’m talking about all children here, not just autistic children. For autistic children, multiply that angst level by a thousand. If you are autistic, you live in a world where so many people are telling you that you are broken, that you need to be fixed, that you need to be trained, conditioned to “act normal.” If you like to spin around over and over, or bounce, or rock back and forth, you are given the message, sometimes spoken, sometimes not, that this is “wrong.” And therefore, by extension, there is “something wrong with you.”
If you are non-speaking, or have difficulty with speaking, or with other physical issues, life is even harder, because you are being told that there is something REALLY “wrong” with you. Meanwhile, you’re trying to live in a world of “talkers” that constantly underestimate your intelligence and capabilities, who treat you like babies, who give you dirty looks, or tease you, or bully you.
You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”
And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model. Autism isn’t defined by all its wondrous capabilities, but by what is seen as lacking. Autism Speaks continuously fuels the bonfire of “wrongness” with every dollar they spend.
And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.
I so wish it hadn’t taken me so long to wake up. I so wish that I could erase all the damage I did to Emma, like subjecting her to the torture of ABA when she was only two years old. But I can’t change the past. I can’t take it back. What I can do, is speak the truth of what I’ve learned to whomever is willing to listen.
Richard and Emma – 2011
Posted in Autism, Parenting, presume competence
Tagged abuse, autistic, autistic children, being a parent, children, criticism, depression, fatherhood, fear, high functioning, internalizing abuse, low functioning, negative messages, non-speaking, panic, Parenting, parenting perspective from a father, Physical abuse, sadness, verbal abuse, violence
“Finding Hope
It cannot be found in fear, anger or when overwhelmed.
Hope must be cared for. It has to be nurtured and fed yummy treats. Hope needs love and trust to grow.
Many people give up on hope because they are told it is not realistic and they need to face reality.
But what is reality?
Do you prefer living with hope or without it?
I prefer to be hopeful.”
*This post was written by Emma, including the title and she chose the accompanying photograph.*
This photograph is what Emma chose to represent hope. It is a pine cone with a metal heart, resting atop her great grandfather’s tombstone.
Trigger Warning: Parental despair
Five years ago I was in a bad, bad place. Life felt unbearable. The future loomed ahead shrouded in fear. I could not imagine a life that was not bleak and filled with pain. There were times when I could not bear the thought of another day. There were times when I felt it was all too much. People would make kind suggestions, but none of their words made sense to me. I was sinking and saw no light. I thought it was because of my specific circumstances. I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her. I was told she couldn’t comprehend this world. I was told concepts like less and more, time, currency were beyond her ability to grasp. I was told she was in her own world. Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children had.
I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed… There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry. I cried for myself, but I also cried for my child. I loved my child. I ached for my child and what seemed to be her inevitable future. Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being. I had fantasies of “heading north”. I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.” Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing. There was a part of me that meant it. I wanted to leave all that pain behind me.
There are those reading this who will cringe at this description. There are those who will judge me and what I once felt. There are those who will point out how self involved all of this sounds. They will say, but how could you not see that what you were feeling was affecting your child? There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror. I understand those responses too, because now, I catch myself feeling those feelings too.
My daughter has defied everyone’s expectations, including ours. She is writing now.
She is writing such incredible words. Sometimes a sentence may take her five minutes to construct. I would cheerfully sit for thirty minutes or however long it takes for her to express herself. Parents hear about my daughter and they say, “Ah, but my child isn’t like that.” And so I ask, “How do you know?” Parents say, “I know my kid. He/she isn’t able to understand.” I once believed that too. And so again I ask, “How do you know?” Parents say, “I know my child better than anyone.” I once said this as well. I thought I knew. I believed what others told me. She would laugh and then run full force into a cement wall, using her head as a batting ram. We would get the dreaded phone calls from her school. All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.” “She does not know the value of a penny.” “We will continue to work on sight words.”
Today my daughter is enlightening me. If you want to know more, read “How We Got Here“. Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.” Her school is now trying to learn RPM so that she can write with them too.
I cried when she wrote that. I cried because I didn’t know until recently. I cried for all the years when she had no way of telling us. I cried for all the times I didn’t believe. I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams. I cried for every single parent who has ever felt the way I once did. I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them. I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.” I didn’t dare hope that one day my daughter might be writing the things she now writes. I didn’t dare hope, it hurt too much.
To the parents who feel overwhelmed with fear and despair – I was once just like you. Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant. I’m grateful now that I didn’t find such a group because there’s another way. I found another way, but not before making many, many more mistakes. This blog documents a number of the mistakes I’ve made over the years, but not all of them.
If there’s one thing I want to say, it’s please, dare to hope. Without that we are all lost.
*As always, I asked Emma for her permission to publish this post.
Watch:
Wretches and Jabberers
Mark Utter’s I am in here
Read:
Ido Kedar’s book: Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.
Emma getting ready to write
“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.” ~ Emma on the topic of the three stem cell treatments we did in 2010
Every now and then people find this blog through a site that promotes stem cell treatments in Central America. In our long and twisted journey since Emma was diagnosed with autism, stem cell treatments were something we once hoped would help our daughter. It is a decision I deeply regret. People ask me whether I think it may have helped her. I do not. People have wondered whether the tremendous strides Emma has made are not directly related to those stem cell treatments. They are not. I can say this with assurance. If you want to learn more about how Emma is communicating, click on this link. The stem cell treatments put Emma’s life in danger. We have no way of knowing what we may have exposed her to because of those treatments. For the rest of our lives we will not know if the stem cell treatments harmed her. We will never know and that is a fact we must live with.
In April of 2010, we believed anything was worth trying if it would help our daughter. Just four years ago, I believed being Autistic meant a life of untold misery. Autism was a list of deficits. At the time, I doubted whether my daughter would be able to learn to read and write, let alone speak in a conversational manner. I had no idea what my daughter was capable of. I had no idea that she already knew how to read. I know this now because she has told me through her writing.
We took Emma to Costa Rica and later to Panama for three rounds of stem cell treatments despite being strenuously urged not to go by a team of stem cell researchers out of Harvard. We were cautioned about the experimental nature of this procedure. We were told it was risky, dangerous, highly invasive, and yet we made the decision to take her anyway. We did this because we loved our child and, at the time, believed anything we tried was worth it, if it might “save” her. (I use that word purposely because this was what we once believed.) We believed we were giving her a chance at life, we believed, if we did not try this, we would regret it. We held out hope that maybe, just maybe this would help her communicate and thereby give her the opportunity to form friendships.
I’m not going to go on a rant about all the misinformation we were given by well meaning professionals, educators, medical experts and pretty much every single person we came into contact with on the subject of autism and our daughter, all of that is pretty well documented throughout this blog over the last year and half, but I will say this, our response to autism and what we believed that meant for our daughter was not unique. We knew of a great many parents who believed just as we did, that any treatment was better than doing nothing at all.
This blog began as a result of those stem cell treatments. I never thought more than a handful of people would read what I was writing. This blog was a way to document the changes we hoped we would see because of the stem cell treatments, a treatment that is not allowed in the United States, a treatment that has since been outlawed in Costa Rica as well. We believed we were doing a good thing. For those of you who never contemplated such drastic measures, I understand how incredible this must sound. For those of you who are Autistic, I can only tell you how sorry I am that this was what we once believed.
We all make mistakes. Some of us have made terrible ones; things we cannot undo, take back or cancel out with an apology, no matter how heartfelt. What I can do is continue to learn, hope to do better, and do all I can to counter that list of deficits so commonly attached to an autism diagnosis, while signal boosting Autistic people’s words, including my daughter’s.
Last night Emma and I discussed those stem cell treatments from four years ago and she wrote the words I opened this post with. When I told her that if I could take those treatments back, if I could cancel them out, I would, in an instant and without hesitation. She then wrote, “Many parents have not loved their children as much as you.”
This isn’t about forgiveness, I know she forgives me, this isn’t about publicly beating myself up, this isn’t about me learning to forgive myself, this isn’t about me at all. This is about misinformation, where that misinformation leads us and the inherent problem with speaking about autism as a “medical disorder” as opposed to a neurological difference; a difference that carries assets and deficits just as non autistic neurology does. This is about oppression, segregation, prejudice and how that plays out in every aspect of autism, autism research, autism treatments, biomed interventions and almost all of the various autism therapies that currently exist.
“Put it on the blog!” Emma said, after we talked about all of this.
“Really? You want me to put this on the blog?”
“Yes,” she said and then she leaned over, gave me little kisses and added, “Aw… sweetheart…”
Emma walking among ruins in Panama ~ 2010
I asked Emma whether she wanted to finish the story she began about an otter or talk about something else. She wrote:
“I want to talk about the New Year.
“This is a meaningful year because I am beginning to write about my ideas about autism and how people need an education in applying what Autistic people feel.
“Fear is non-living. It cripples the mind and deadens the soul. Raging beasts of pain masquerading as stims cause many to misunderstand.
“I am not without thought. My forever beautiful mind needs nourishment all the time. Autistic people are left to linger in a secluded world by those who could be helping instead of harming them.
“Please care enough to alter how you interact with those who may seem different than you, but who are actually the same. We are all beings with similar feelings and hopes.
“Do not believe your fears. They will lead you the wrong way.”
Emma told me she wanted me to publish this on the blog today. Emma turns twelve this month. I have spent more than fifty years learning what she already knows. 
Em & Ariane on New Year’s Eve ~ 2013
Posted in Autism, communication, Rapid Prompting Method
Tagged Autism, autistic, communication, Education, fear, New Year, non-speaking, Parenting, prejudice, Seclusion, segregation, wisdom
*A quick note on today’s flashblog ~ This is Autism. In response to Suzanne Wright’s upsetting and fear-inducing letter entitled A Call for Action a Flashblog has been organized to take back the phrase “this is autism”, which Suzanne Wright used several times in her letter that was posted on Autism Speaks’ website, the organization she and her husband Bob Wright created eight years ago. Suzanne and Bob Wright and their organization’s beliefs are exactly what I hope my daughter never sees, hears or is confronted with, but that she feels the repercussions from on a daily basis.
I asked Emma if she wanted to write something for today’s post with the title, “This is Autism”. She wrote that, yes, she did. The following is what my daughter wrote, pointing to one letter at a time on a stencil board with a pencil.
This is Autism
Autism is anything.
It is not bad,
it is a mindset.
Autism is a method of energy,
it is how I think.
Autism is derided and except in some accepting eyes,
it is seen as not a nice thing,
but
it is me.
Sometimes there is such tremendous darkness, it scares me. Sometimes my instinct is to go deeper into the darkness. Sometimes my instincts are not helpful. Sometimes my instincts lead me the wrong way. Sometimes…
When I was in my thirties I went down into the darkness, so deep I began to wonder if I would ever find my way out. There was a moment, a moment when I stood at the edge and contemplated the void. It felt blissful. The darkness seemed to hold the answers I sought. The darkness held the promise of calm and peace and quiet from all the noise and pain. It beckoned to me and I believed, for a moment, I believed it was the answer.
I would like to report that in a single instant I made the decision to step back from the edge, but it wasn’t like that. It was hard to move away. It was difficult and painful and there was nothing elegant or easy about it. Stepping away was more like an agonizing scramble of falling, tumbling backwards and clawing forward, grabbing on to whatever scrap of hope I could find. Some days felt like a slow, steady, groveling crawl on my hands and knees just to get through the hours that make up a day. And on those days I believed this would be my life forever and I wondered how I could continue. It was on those days, when I believed I knew what the future held, those were the days that were the hardest.
There are tricks I learned, little things I learned to do, some are silly perhaps, but I do them anyway. When things feel like they are too much, I tell myself I can get through the next hour, just one hour without hurting myself or anyone else. Just for the next hour, I will not do or say anything that will cause harm. Just for this next hour. And when that hour passes, I take the next hour, one hour at a time. I have done this for many years now and funnily enough, this method of taking one small manageable segment of time and being present for whatever it may bring continues to work. During those early days when all of this was new to me, I even gave myself permission to do whatever it was that I wanted to do, but knew it would hurt me after the hour had passed. Then the hour would pass and I would see I had gotten through it and I would say, okay, just one more hour. I can get through one more hour. And I did one hour at a time, I did.
I learned to make phone calls or text people I trust and know are safe. I let them in, I asked for help. Sometimes help meant listening to another person, sometimes it meant they listened to me. I learned I had choices, even when it felt that I did not. People had to remind me to do the thing that everything in my being screamed at me not to do – reach out in kindness to another. Sometimes even when I could not muster up the strength to be kind to myself I could show kindness to another, so I do at least three anonymous acts of kindness. (Using the present tense now.) The anonymous part is important. It’s imperative that my actions are not about getting thanks or being appreciated, but are about actively taking actions where I can be the person, even if only for a few minutes, I would like to one day grow up to be.
I look back on those years, so long ago now and no longer recognize that person who contemplated the darkness. I do not know her. She is unfamiliar to me and I’m grateful. Mine is but one experience, there are countless others. I have no answers. All I know is that to keep the life I now enjoy, a life I could not imagine myself ever having, a life that, so many years ago, would have seemed too good to be true, I must do certain things on a daily basis to make sure that tomorrow and the next day will not involve being anywhere near the edge where I am tempted to peer down into that pit of darkness and contemplate its depths.
If you or someone you know is struggling, reach out for help. Tell someone else, let them help and remember you are not alone.
Posted in Addiction, depression, hope
There once was a girl who was in tremendous pain. Her pain was so great she couldn’t manage it. She tried, believe me, she tried. She immersed herself in books, particular those dealing with people’s neurology, but also dabbled in science fiction, mysteries, thrillers, horror, romance, this was before the age of memoirs, so she devoured studies of other people written by psychiatrists, therapists of every ilk and doctors. Losing herself in reading was thrilling, but it didn’t help her sort through the intense feelings she had. All those books couldn’t begin to heal her often overwhelming feelings, anxiety, sadness and fear.
She thought that moving away might help so she did that, and then she moved farther and farther still and eventually she found herself living in another country and all those intense feelings moved right along with her. By this time she was using substances to quell the pain, on a daily basis. She knew she could zone out and for a little while anyway she would feel nothing at all and it was a great relief. But as soon as the substance wore off she was left, once again, with herself. She went from seeking relief, to needing relief, to feeling that if she didn’t do those things that gave her even momentary solace she might die.
There is no other way to describe what she went through when she could not indulge in certain behaviors. SHE WOULD DIE. She did not know this for a fact, but she felt sure that she could not exist without the things that changed her consciousness. She was convinced that these substances helped her cope and that without them she would not be able to, and all those feelings would overwhelm her, suffocate her. She lived in terror of this. Years went by and she did the best she could, but her need for calm and peace was never satiated.
As time went on she knew that if she was going to continue living in this world she would have to change, she would have to find other ways of coping, of just being. And again her fears both mesmerized and caused her to stay stuck doing the same things again and again that now did not give her the relief they once did. She knew in her heart she would die if she continued doing what she had been doing. She knew it was only a matter of time now. The thing that she once thought was keeping her from dying, was the very thing that would kill her. Still, how to change? What could she do? How would she stop?
At first she sought help from doctors and therapists and the medical profession. She tried the various things they told her to do. She made charts and ate specific foods and took supplements and lots and lots of vitamins, but nothing she did made a difference. She went to psychologists and talked and talked, for years she talked, and while that helped her understand some of what ailed her, all that talk didn’t help her stop hurting herself. One therapist, someone who loved her very much and had been trying to help her for many years said to her, you must find others who do what you do, they will help you. So she found them. Hundreds of people just like her who did the same things she was doing. They listened to her pain and shame and they nodded their heads and told stories of their own and they said, “Here. Grab our hand. We will help you. We will show you the way through because you cannot do this on your own. This isn’t about will power, this isn’t about desire, this is about needing help.” And so she did, though she was filled with abject terror and was not at all sure she would be able to follow them, she did. They taught her to breathe when she was scared and they took her calls in the middle of the night and they came to her when she was too frightened to leave her apartment and they sat with her when she was too overwhelmed to move. They taught her that she alone could not help herself, she needed others. This was both a great relief and also her greatest fear.
Over time she learned to tolerate all those feelings she once believed would kill her. It was incredible! She could not believe she was able to sit with feelings! This was a revelation and she grew stronger and more able to be in the world. She learned to ask for help and she found some people were safe and others were not. She learned to be in a relationship with another person and to respect them and to honor their boundaries and she experienced the joy of kindness and acting in kindness for no other reason than because it was a part of who she was – to be kind. She experienced the joy of helping others who were in pain and came to believe there is no greater gift in this life than to offer a hand to another being who is in the depths of despair and pain.
(To be continued)
Posted in Addiction, fear, Gratitude
Tagged addiction, coping, fear, feelings, intense feelings, Mental Health, overwhelm, pain, Psychotherapy, Relief, tremendous pain
Last night Richard and I had one of our conversations. It’s the conversation that starts with, “If only we’d known what we know now…” The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…” It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…” And then the other joins in with, “Literally. We would have literally done everything differently!”
One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now. How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic. How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror. How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…” “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!” “You should try…”
I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…
What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”
What we were told about autism was WRONG. Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true. Having an Autistic child does not mean the entire family will be dragged down. No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family. Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.
We have been told all kinds of things about our daughter by non autistic people. Not one of their predictions has come true. NOT ONE! Read that again. Nothing we were told would happen, actually has! Think about that. Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now. But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact. If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally. We would have laughed and walked away.
We would not have hired the agency who provided us with round the clock therapists. We would not have shuttled Emma from one doctor to the next. We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass. We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology. All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much. The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.
So here’s the truth about my Autistic child:
She is a human being with desires, wants, needs, emotions and feelings, just like any other child. If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent. If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes; I will have led a good life.
Emma and Nic ~ 2003
“We all have shame. We all have good and bad, dark and light, inside of us. But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable. In order to be vulnerable, we need to develop resilience to shame.” ~ Daring Greatly by Brené Brown
I’ve written about shame before. A couple of commenters on my last post about shame told me to watch Brené Brown’s TED talks on vulnerability and shame, which I did. B. Brown also has several books, Daring Greatly, is the one I’m currently reading, where she writes, “A sense of worthiness inspires us to be vulnerable, share openly, and persevere. Shame keeps us small, resentful, and afraid.”
Shame is something I am intimate with. I don’t know many addicts who aren’t. I’ve written about addiction and specifically having an eating disorder ‘here‘, ‘here‘ and ‘here‘. The self-betrayal implicit in addictive behavior exacerbates the pre-existing shame, creating depression and self-loathing. Attempts to alleviate those feelings with addictive behavior only fuels them. Shame heaped upon more shame is not a recipe for happiness or success. Ignoring shame, trying to bury it, and trying harder to not feel it, doesn’t work either.
There have been a number of studies suggesting a link between addictive behavior and autism. I don’t find this surprising given how feelings of alienation, isolation and fractured self-worth all contribute to wanting to seek refuge and escape. Except the thing we are trying to escape from is often ourselves. Many of us have internalized our shame, particularly those of us who tend toward perfectionism. Add to this obsessive tendencies, a desire to be loved, wanting to fit in, believing we are “less than” and addiction can feel like a perfect fit and the only way we can survive in a hostile, unaccepting world.
Oddly, we, as a society, tend to attribute laziness and a lack of will power as the reason people eat too much, drink too much or spend more money than they make. Similarly, people seem to think autism is a choice or at least the behaviors associated with autism are. These people apparently believe Autistic people can “lose” their “autism” if they can just be trained to hide their “problem” behaviors or the things they do that make them obviously Autistic. Many Autistic people talk about being scolded and punished when they were unable to produce the results expected of them when told they needed to “try harder.” Trying harder will usually make the person feel more terrible about themselves.
I worry about a culture that is conditioned to believe we must ‘train’ our Autistic children to behave in ways that most cannot, or cannot without a massive cost to their self-esteem. I worry about “autism treatments” and “therapies” whose underlying message is that our children are not okay. I worry about what our children are internalizing. I worry about addiction, depression, suicidal ideation, and how those things get set in motion at a very young age from feeling we are “bad,” not worthy and less than. I worry that because many do not understand autism is a neurological wiring, or do not take into account the experience so many Autistic people are describing, we are raising fearful children, filled with shame for who they are as human beings. Instead of helping our children flourish, encouraging them to be all they can be, we are trying to make them into something they cannot be.
I love this photo of Emma because it captures her in all her Emma-ness!
Posted in Autism, Parenting, shame
Tagged addiction, Autism, autism therapies, autistic, Brené Brown, eating disorders, fear, Parenting, self esteem, shame, TED, vulnerability
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