Tag Archives: violence

A Father’s Powerful & Extremely Personal Thoughts on Parenting

Posted on July 11, 2014 by | 45 comments

*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.

My Beautiful Husband and Daughter

Richard and Emma – 2011

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Posted in Autism, Parenting, presume competence

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Sparrow Rose Jones’ E-Book

Posted on October 22, 2013 by | 14 comments

Sparrow Rose Jones wrote an e-book No You Don’t: Essays From an Unstrange Mind that is now available on Amazon.  The title comes from a powerful essay she wrote on her blog – Unstrange Mind –  in response to the many parents who have told her how they would like nothing more than to have their autistic child grow up to be like her.  Sparrow writes:

“I used to say, “I hope she’s much better off than I am,” or simply, “no, you don’t,” but over time I learned that parents refuse to accept that answer.  Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility.  Or maybe they’re just baffled.  But sometimes they even got angry so I finally learned that I should answer, “thank you.  That’s very kind of you to say.”  Reinforced behavior — reinforced by social censure if I dare give the wrong response.”

Sparrow writes,

“… what I wish to come from this book:  a recognition of the shared humanity we all enjoy and a sense of connection among people coming together across a wide gap of experiential realities.”

And again from the essay – No, You Don’t:

“… they think, “my child is non-verbal.  My child goes to school and crawls around on the floor, meowing like a cat.  My child still wears diapers while all her same age peers have been toilet trained.  My child bites and hits people.  My child bites and hits herself.” And so on.

“Then they hear that I was many of those things, myself.  I was kicked out of the classroom for crawling on the floor and hiding under the tables.  My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom.”

Further along she writes:

“I was raped.  I was abused — domestically and otherwise.  I was molested.  I was taken sexual advantage of.  I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it.  I want you to teach your children to value themselves and I want you to teach them to own their bodies.”

Sparrow writes about how she lives in “crushing poverty”, how she has spent a great deal of time homeless, couldn’t keep a job,and was “unable to consistently keep a roof over my head or food to eat.”

In her follow-up to her No, You Don’t essay she writes about the response she received because of it.  “There was a small group of people, though, who read my essay and became angry.”  She describes how she was attacked by parents of autistic children, “I felt like I was being punished for writing and all that compliance training kicked in as a result.  I closed down my blog.  I became physically ill from the stress and shame and ended up in the emergency room more than once as a result.”

The next essay is called “Bullies, Bullying, and the Struggle to Speak My Heart”.  The first sentence of that essay is:

“Bullies have been one of the most constant things in my life.”

Sparrow writes:

“An Autistic kid who is behaving in a violent manner is an Autistic kid who is seriously suffering on a daily basis and needs a lot of help.  And being able to speak doesn’t always mean that a kid will be able to tell you what is wrong.”

There are too many wonderful essays in this e-book to quote in one short post.  Sparrow writes honestly with tremendous compassion for all of us.  She ends her beautiful collection of essays with this:

“May my journey of self-discovery inspire you to journeys of your own.  Where there is life, there is hope.  Autistic lives do not always look the way you might expect or hope they would look, but you must keep a sharp eye out for the tender flowers as you travel and you must understand that Autistics often bloom in surprising and exquisite ways.  Don’t try to shape us to your garden or we may wilt.  Enjoy and foster our own, unique beauty in all its fierce wildness and you will find your heart and your truest reward there.”

No You Don't

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Posted in Autism, Autism Books, Blogs By Autistics

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On the Topic of Violence…

Posted on September 13, 2013 by | 49 comments

On the topic of violence or actions, that by those witnessing, appear violent, actions that harm another or oneself, there is one thing that stands out, one thing every single person who has physically harmed themselves or another person have all agreed upon, and that is the need for a self-appointed safe place.  Not a place chosen by another, which can too often be seen as punishment, but a place that the person who is overwhelmed can go to, a place that feels safe.  A place that is sacred, that will not be violated; a place that is a safe haven.

From reading the numerous comments, emails and DMs people have sent over the last few days, it is the one thing every single person has agreed upon.  (If you’d like to read the other posts on this topic click ‘here‘, ‘here‘ and ‘here‘.)  And interestingly, not only a safe place for the person who is feeling overwhelmed and whose actions are harming others and/or themselves is needed, but a safe place for all present, those who either by chance or because they are trying to defuse the situation, is necessary.  A number of people have asked, but what if my child follows me or is breaking things and is a danger to themselves?  Again a number of people answered this question with the same answer.  They all said that in such cases it will take some time, repeatedly moving to a safe space, being followed, and leading them back to their safe space.  Every single person said that talking, reasoning, arguing, placing demands, insisting that the person “use your words”, telling them to take deep breaths, demanding they count to ten are uniformly unhelpful, and in most cases, cause the person more distress and further upset.

Another aspect to all of this is escalation.  Lots of people have described how they escalate or their child does.  One wrote about a child who had 8 escalation levels and that “if he gets to 4, they’ve lost him.”  They wrote that “most kids have at least 2 before they get to the attacking stage.”  They described one child whose first level was so subtle, many did not even notice or pick up on it – a heavy sigh.  Another parent wrote about a certain look the child gets, a stare off into space that they now know means they must get them to safety.  All agree that catching it before things escalate is key.  This is something Judy Endow talks about in her book, Outsmarting Explosive Behavior.  She describes “the four stages of explosive behavior: Starting Out, Picking up Steam, Point of No Return, and Explosion.”

Ari, who is non speaking and has a blog, Perceptions, described in detail what things help and what does not.  He wrote, “Am autistic and nonverbal. Never speak. Use devices with pictures mostly, but can type (sometimes). Have been violent. Usually only when people around me have problems below.

Problem #1. No one thinks to get one of my communication devices, switch to meltdown page, and put it in my hands to see if I could use it. Communication is hard. Some times I need be helped to use picture buttons. I have a page specifically for pre-meltdowns. It never gets used.

Problem #2. Blocking me, restraining me, pushing me into a corner, or otherwise making me feel trapped is not okay without my advance consent. Can follow me, stay close enough to see what I do or where I go, but let me go. Walking is calming. Non-autistics get to walk when stressed, why not me too? Trusted friends get my permission to touch my arm to guide me in safe walking direction. So much easier when there is trust and respect.

Problem #3. I hit myself, pull my hair, scratch/cut my skin, do other harmful things. Very rarely is done hard enough to cause serious damage. I understand it is uncomfortable to watch, but interfering will make me hurt myself far more. If you cannot bear to see this, leave and call someone else who can instead of interfering with my efforts to calm myself.

Problem #4. This one applies to everyone, I think. #1-3 may not be true for anyone other than me. Problem #4 is BELIEVE ME. Believe what I say about me because I am only one who knows what it is like to be me. If I tell you that you are wrong about me, accept that you are wrong and pay attention to what I say is right.

Problem #5. I admit there are times when I cannot calm myself, they are rare now but still can happen. There are acceptable ways to protect me (and others) from harm.  It usually involves medication, thick soft blanket, silence, darkness, patience, and ice. If person can resolve #4 with me, I am happy to discuss #5. Otherwise… Energy is not infinite, left alone I will eventually stop screaming and fall asleep. There may be blood. I will not die. Ice for my head when I am done is much appreciated. This is when I am most likely to get violent towards others. I know it is scary. I know. For me too. If unsure of what to do, just stay away from me, be quiet, wait for calmness. I will look for help when I am ready.

#5 usually happens because of problems #1-4. It is best avoided.

Last time was about 1 months ago in a hospital waiting room. I am 31 years old legally independent adult (whether I should be is another matter entirely). I just needed to walk. Instead I was pushed into corner and trapped until doctor called us into private room. If had been restrained longer probably would have hit person hard. Probably would have been charged with assault. Probably sent to psych hospital again. This is not my fault. I can not fix this. But at least it has taught me self control. I can endure incredible amounts of pain/fear/chaos without reacting, now. I did not hit her.”

I asked Ari what he meant by “medication”.  He responded, “Only medication now is ativan. Had haldol many years ago and it worked better for #5 situations. But not good for anything less intense, unlike ativan. Need better. But no doctor good with this. So get no help finding better. Need body sedation, sensory pain away, fuzziness from situation, to for logical thought processes work again so can calm self.”  

He then added:  “Broken logical reasoning ability. In those moments, no logic. Only chaos.”

A parent wrote:  “People have seen it and have threatened to call the police (when he was five!) or worse.  I really didn’t know what to do because he would get so upset and frustrated.  People said to put him in therapy, but the thing I did that saved us was I put our whole family in therapy.  We learned to communicate with him in ways he understood.  We learned that we weren’t always right in how we handled it, and we often made things worse.  We learned to find effective problem solving solutions (mostly following The Explosive Child by Ross Greene) It really made a huge difference and he rarely has violent meltdowns now.  When he does, I have to step back and ask myself what was going on, was I not listening to him?  Was I placing too many demands on him?  Was I not allowing him to effectively self advocate?  He always says to me that he doesn’t want to do it, he just is so frustrated and has a hard time communicating and identifying his feelings. We are still a work in progress, learning together how to understand each other.   I KNOW he doesn’t like it when he is violent, but he is doing the best that he can with the tools we give him.  I know this because he tells me, and because I was also a violent child.  My target was my younger sister sometimes, but mostly myself.   I was beyond frustrated and felt completely powerless due to the environment in which we were brought up.  I know I am doing better with my son than what I grew up with, but there are times I screw up.  I had to relearn everything I was taught about children, about communication and about respect.  I had to learn that “noncompliance” is really just self advocacy and that it’s actually a positive character trait!   That has made all the difference.  I really believe that kids do the best that they can with what they have to work with.  Kids who are violent are frustrated and need our help to find their voice.”

If any of you know of other blogs, articles that have been helpful or are writing something on this topic, please send the links in the comments section so I can include in future posts.  I may need to make a separate page for all of this…

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Posted in Autism, Parenting, violence

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What Others Had to Say: Love, Overwhelm, Violence

Posted on September 11, 2013 by | 51 comments

Yesterday I wrote a post entitled, When Upset Turns Violent.  I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent.   I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things.  One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent.  Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment.   Many people remain silent, which serves to further feelings of isolation and disconnect from community.

Another thing I realized as I read, was how both parents and those who are in overwhelm are actually feeling similar feelings of powerlessness and wanting a safe place to go.   I identified mightily with all the feelings described and thought it might be most helpful to reprint a number of the things people have written, both from the comments section on this blog, but also from some of the emails I received.  (For those who asked that I not reveal what you wrote, don’t worry, I haven’t.)   There are too many wonderful thoughts, comments, advice and experiences to publish here in a single post, but you can read, at least some of the comments in the comments section of yesterday’s post and a few that came in on Emma’s Hope Book Facebook page.

What follows is a sampling from some of the terrific comments received.  There are many more and they are all insightful and wonderful.  So please do read the related articles at the end of this as well as all the comments from those who so generously wrote in on this blog.  Obviously, there is a huge need for more conversations like this…

A few quotes from parents –

“I just want a safe place where I can talk about this stuff.  Not publicly.  I don’t ever want to be “one of those moms”  but I want to be able to talk about what’s going on with other parents who know what it’s like.”

” I know what it is to sit in an IEP meeting begging for help for my child with my eye swollen shut and bite marks and scratchs covering my arms.”

“I am scared of ____ and that makes me feel terrible.  What kind of parent is scared of their own kid?  A kid I love with all my heart.  A kid I want to help…”

“It changes you when you live in a state of perpetual fear and not having any place to talk about that makes it  harder.”

“I would love a support group, but not where everyone sits around blaming all their problems on autism and their kid.”

Comments from others:

Emily K. wrote:  “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

Autisticook wrote a number of really powerful and wonderful comments, this is but one of them:  “I have given some thought to what I would have needed as a child to cope with my violence. I would like to start with a caveat: first of all, anyone who knows me in real life would be shocked at my description. The only people who believe I can be violent are the people I’ve actually hit. That’s about 4 or 5 people. The rest of the world calls me sweet natured and a good person and empathic and supportive of others. I’m also just over 5 feet tall and present as extremely non-threatening.

Second of all, my parents are still the most important two people in my life. A lot of people in the autism community weren’t so lucky with their parents and have a lot more to deal with as a result. I’ve been incredibly lucky to have such generous, loving people prepare me for the outside world. I have a lot of emotional stuff that’s coming out now that I know about autism, but I don’t blame them for any of it. So here goes: the things I needed as a child and didn’t get.

1. Don’t blame yourself. Don’t punish yourself for not being a perfect parent. I can tell when you feel bad and what I’m learning is that I need to be perfect as well. When I’m not, I feel as if I’m disappointing you and making you feel bad. I want you to be happy with me. But when I make you feel bad, I feel bad as well and that is making me even more stressed out because I’m still learning to deal with my emotions.

2. It will get better. I’m trying to learn how to walk. You can show me how it’s done but you can’t force me to walk. It might take me a bit longer to learn this, or I might do it a bit later than others. But it doesn’t mean I will never learn. I just need someone to show me and teach me and support me. This is as true for feeling upset as it is for walking. Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.

3. Help me recognise my triggers. I might come home from school cranky and tired and overwhelmed. My brother sticking his tongue out at me might simply be the last drop. If I am not saying much, if I’m curled up in the big chair kicking my legs out, or if I seem to be absorbed in an activity like playing with my toys and not paying attention, it might be because I’m trying to self-regulate and deal with all the stuff that’s coming at me. Help me recognise that this is what I am doing. Maybe you need to learn how to read my behaviour first, like hanging upside down in the chair (vestibular stims) and kicking my feet (propioceptive stims) and the attention on my toys (visual or tactile stims). You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.

4. Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me. First it will be my brother who stuck his tongue out at me. And then it will be you for restraining me from hitting my brother. Or myself for being in the way. Triggers triggers triggers. I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.

5. Don’t ask me questions. If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again. Ask me too soon and it will just be another trigger. I am dealing with my overload, with my own feelings of anger and guilt and frustration and sadness and pain, and there’s so much going on that there’s no room for words. It’s hard enough for me to even understand, LITERALLY understand, what you are saying. Formulating an answer is simply not going to happen. However, if you talk about it with me afterwards, that might be a really big help for me in learning how to understand emotions and how my mind works. I may sound resistant to questioning, but that’s also because I’m afraid of going into another emotional meltdown.

6. Don’t try to distract me. I’m not having a temper tantrum, I’m having a meltdown. Trying to get me to focus my attention on something else means I get even more input that’s getting on top of the input overload and I just can’t deal with that. Fewer triggers, not more. You can try getting me to hit a pillow instead of you, but the pillow isn’t triggering me so I might not listen to that. What’s better once I get that violent is bringing me to a GUARANTEED safe space (I emphasise guaranteed because it needs to be not just a space of your choosing, but a space where I can feel safe no matter what and where I won’t be forced out again). My safe space was the back of my mother’s wardrobe, between her clothes, because even if I had the door to my room closed, people still barged in. Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.

7. Yeah, it takes that long. Please give me time to process. I will come to you once I’m ready. Because I love and trust you, even if I don’t always show it in a way that you can recognise. Please don’t punish me for not understanding why things went wrong or for losing control. I’m punishing myself already. Trust me on that.

Anon wrote:  “I used to hum to myself for comfort when I was sick (about 7yrs) and my father used to threaten me into silence – it was his ignorance and fear, not malice… but I stopped humming.”

Autisticook wrote:  “It was NOT HAVING WORDS and SO MUCH FEELS and STOP TALKING I CAN’T MAKE SENSE OF THINGS and HELP ME NOTICE MY DESPAIR NOTICE MY NO WORDS HELP ME. And above all just stop stop stop stop stop.”

Ischemgeek wrote:  “Especially big for me was stop yelling at me so I can think and figure out what you want because I don’t even know what you want and why you’re screaming at me I just know you’re screaming and I can’t take it just stop.”

And in another comment wrote:  “For me, violence of the meltdown variety (as opposed to sibling bickering violence, which stopped around age 8) was never so much about getting my way and more about gettingaway, if that makes sense.”

MonkeyPliers wrote:  “I’d be concerned about any child developing the kind of anger towards her- or himself that I learned to have towards myself from not being understood and being accused of “putting on a display” when I couldn’t regulate myself.”

Related articles

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Posted in Autism, Parenting, violence

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When Upset Turns Violent

Posted on September 10, 2013 by | 92 comments

A number of people have reached out to me privately with questions about how to help their child who is violent.  They fear for their other children’s safety as well as their own, but are frightened to reach out for help because they worry their child will be taken from them.  This is not an easy topic.  If you do not have a child who is prone to violence, it is difficult to imagine what that child is going through.  If you are not and have never been the recipient of violence it is difficult to imagine what that is like.  Similar to self injury/harm this is a hot button topic for many people, not just parents who feel powerless to help their child and feel they have nowhere to turn, but for the person who does not have any other way to express themselves.

So I am asking for all of your help.  If you once were or currently are someone who knows anything about responding to the environment and people in your life with violence, and are comfortable telling me what that experience is/was like for you, please email me at:  emmashopeblog@gmail.com.  Also if you are in a position to tell me what might have helped, what, if anything, might have given you the support you needed/wanted.  Was there anyone you could talk to?  If you cannot speak or cannot rely on verbal speech when upset, were you able to type?  Would that have helped?  Is there anything that might help/would have helped?  Do you have advice for parents?  Do you have advice for those who are under the care of another person?  If you are the parent of a child you are frightened of and want to reach out, please do.  Please describe your situation as best you can, as well as what might be helpful to you.  In other words would a help/hotline (if one were available) be something you would use?  Would you prefer an anonymous support group where you could discuss what you are going through with others?  Would something else be helpful?  Anyone who contacts me will remain anonymous.  Anything you tell me, I will quote as anonymous.  If you prefer that what you write NOT be quoted, please be sure to tell me that.  All names and/or places you tell me about will remain confidential.

I don’t know what can be done, but it seems to me, from some of the stories I’m being told, that something needs to be done/created to help all involved.  Maybe you know of resources that have helped, maybe something you’ve tried helped, maybe there was something/one helped you.  If any of you know of anything, please let me know.  Any and all information is appreciated.  Maybe just talking about what’s going on in a safe place is a start.  You can also write in the comments section anonymously, if you prefer doing that.

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Posted in Autism, Parenting, violence

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Where Fear Leads Us…

Posted on December 18, 2012 by | 47 comments

I used to work at an ad agency.  One of the first things I learned was that there is one emotion that motivates people more reliably than any other.  Fear.  Fear compels people to do a great many things they might not otherwise do.

Once we’ve become convinced that something is worth fearing it is extremely difficult to reverse.  When we speak of Autism using words and phrases that cause us to fear Autistic people, we are doing tremendous harm in the short and long-term to that population, harm that will be very difficult to reverse.   Convincing people to feel fearful about something or someone is one of the easiest things to do.  Convincing them, once they are convinced, that it was all a “false alarm” is extremely hard.  So when those first news reports came out linking Aspergers with the shooting at Sandy Hook Elementary School, it only took an unethical few to do tremendous damage to an entire population of people.  Despite the fact that if you google “Aspergers and violence” the first dozen pages that come up are articles stating that there is absolutely NO connection between Aspergers and violence.  And yet, my Autistic friends and I are terrified.

I am frightened for my Autistic daughter and for those I love and care about who are Autistic.  I am frightened by what people will assume and how they will then treat those they assume are Autistic.  I am frightened for my friends who are Autistic, will they be safe?  Will a non autistic person hurt them, say cruel things to them, treat them differently because they fear “autism” and therefore “Autistics”?  I am frightened even though the truth is neurotypical people are far more likely to commit acts of violence than Autistics.  Watch these videos on Youtube ‘here‘ and ‘here‘.  Videos showing Autistic and disabled people being tortured by others.  Read these reports ‘here’, ‘here‘, ‘here‘ and ‘here‘ about the systematic abuse of Autistic people, abuse that continues unabated all the time.

It is WRONG to condemn a group of people, people who have suffered at the hands of those who now accuse them, a people who have been marginalized, some of whom cannot defend themselves because they do not speak and have not been given the means to communicate effectively through any other means.  It is important that you know.  It is important that you understand the ramifications of connecting autism with murder.   I want you, no, I need you to understand why the words we use, the constant stream of negativity in relation to autism is causing untold damage to my daughter, to your daughter, your son, your Autistic child, to their futures, to the people I love, to my friends, to all who are Autistic and have had to deal with exactly this kind of prejudice their entire lives.  It has to stop.  It has to stop.

Children were killed, murdered.  The horror is unbearable.  But to add to an already heinous act by targeting a group of people and making it about them instead of what has happened, is adding more pain and agony to more children’s and people’s lives.  Innocent people.  Innocent children.  Don’t we see that?  Can’t people see we’re making it worse?   We aren’t ensuring our children will be safe with these beliefs.  We aren’t making the world a better place with more prejudice, bigotry, false assumptions, and our fear.  Our fear is what drives us to conclude that we are fighting a false enemy.  Our fear is what compels us to hurt, lock up, institutionalize, condemn and torture.  Our fear is what causes us to commit acts of violence against those we’ve deemed violent.  Our fear…

1Freedom Tower

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The Art of Breathing and Just Being: Lessons From my Daughter

Posted on December 17, 2012 by | 18 comments

One of the single most difficult things I have had to practice in life is the art of being present.  Simply being shouldn’t be so hard, yet I have found it is.  It is something I have to practice, something, I have come to understand, that is much like breathing, I will never be “done with it”.   Doing nothing is surprisingly difficult.  Doing nothing in the face of horror is even harder.  When I have a great many feelings, sitting still and being present is all the more difficult.  The last thing I want to do is sit and actually feel.  Why would I want to do that?  Now’s the time for action (!) and yet, it is during these times that it is vitally important for me to practice being still.  Every fiber of my being is screaming at me to move, to make sense of, to understand, to find the thing, the motive, something or someone I can blame, something that allows me to say, oh yes, of course it was that, that’s why this has happened.

Yet, it is an illusion.  The feelings remain no matter what is said.  No matter what has been written, the feelings remain.  Feelings – grief, fear, horror, sadness, confusion, pain, suffering, outrage and anger.  Feelings.  Lean into them.  Do nothing.  Breathe.  

Emma, unlike me, does not need to practice the art of being.  She does this without trying.  It seems to me, as I watch her, that she comes to this idea of “being present” naturally.  It is not an “idea” for her, it is simply life.  Emma just “is”.  Emma is one of the happiest, most joyful beings I have ever come into contact with.  Her median state is one of happiness.   She is without judgement or blame.  She does not hold onto resentments or grudges.  Emma does not talk about people behind their backs, she does not condemn or bully.  Emma is not dishonest or cruel.  And yes, Emma is Autistic, which must not to be confused with “mental illness”.   In fact, Emma is the opposite of “mentally ill”.  Perhaps because of her neurology she is able to be present in a way that I do not come to as easily.  I must work hard at something she does not think about.

People say all kinds of things in anger, in grief that have little to do with anything.  People say things while trying to make sense of something that is senseless.  They latch on to an idea, they offer a reason, a cause, it’s because of this, or that they say.  Oh, that person did that because of __________.  We talk and reason and blame.  People say and do things we find offensive, things that will hurt us and our children.  When people are scared they say and do things they would not, upon deeper reflection, say and do.  So don’t do anything, I keep telling myself. Sit and be still.  But it hurts to do so.

Don’t say anything, just sit and be present.  And it feels unbearable.

Don’t move, just be present.  Look around.  What do you see?  What do you hear?  What do you smell.  What are you feeling?   I don’t want to feel.  

Close your eyes.

Breathe.   Fear.

Be present.  I can’t!

Breathe.   Anger.

Breathe.  More fear.

Breathe.

Breathe and just be.

Emma performing for us, Saturday evening

1Em_performs

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