Category Archives: Parenting

“Look At Me”

Posted on October 4, 2013 by | 33 comments

When I was young, my father would call my siblings and me into his home based “office” when we had done something wrong.  We knew when we were summoned that we were in trouble.  I can still remember, now more than four decades later, the feeling of dread when my father would call my name.  I still remember standing before him, terrified, often angry and defiant, while he spoke to me, describing whatever it was that I’d done wrong.  And I can still remember those dreaded words, “Look at me when I’m speaking to you!”  The tone was not an invitation, but a demand, a demand for compliance, a demand for respect that I did not feel, a demand to do as I was being told.  And so I did.  I would pick a point near his eyes, without actually looking at him, sometimes it was at one of his large eyebrows, or maybe a single hair that grew from his ear, or the bridge of his nose, anywhere but into those steely blue, angry eyes.  Those eyes that when I looked into them expressed pain and anger and contempt beyond anything words could convey.  It was physically painful to look into his eyes.  It was deeply, soul-wrenchingly, painful.  It tugged at the core of my being and threatened to annihilate me.  I learned, early on, to do anything BUT look him in the eye.

For years I’d forgotten about those moments of horror when I would get called into his office.  And then I gave birth to a beautiful child.  A child who would be diagnosed with autism and suddenly those awful words would be repeated by a great many and I felt that same terror all over again.  But now people who knew about autism, professionals, people who devoted their lives to working with children on the spectrum were telling me of the importance of eye contact and oddly I found a way to compartmentalize my past, after all I am not Autistic, therefore my experience must not be relevant or similar to someone who is.  And anyway, I only had trouble making eye contact in this one specific instance, it was unrelated.

I was told autistic children must be taught to look at those who are speaking to them because it was important they learn to “fit in”, and that this was what people expect and that those who do not learn to make eye contact will be thought suspicious.  So I nodded my head and proceeded to demand that my child “look at me.”  And then I read a post from an autistic person who wrote of how physically and emotionally painful it was to be told they must do this thing that hurt them.  She said it was like looking into the depths of the other person’s soul and that often the pain she saw there was too overwhelming.  And I identified.  I understood what she meant.  I had felt that way with this one person, my father, and it was exactly as she described and it made me stop and think about what I was asking of my child.

You see, I had only had this experience with one person, it was not universal, but her description reminded me of that pain I’d felt so long ago and I began to wonder, what if that experience that I had with one person was how it felt with everyone whose gaze I met?  What would that be like?  I knew then that it would be horrible to have those words said, over and over by so many, and I vowed to stop demanding this of my child.  Whatever this might cost her in the long run, whatever others might conclude about her because she did not learn to “look” at others in their eyes, I decided it was worth it.  I did not and do not want her to ever feel that terrible feeling of sadness, of pain, of overwhelm or whatever it was that made her avert her gaze to begin with.

Interestingly, my daughter often makes eye contact, though I do not for a moment believe this has anything to do with me or anything I did or didn’t do one way or the other.  In fact my daughter wrote she likes looking at people’s eyes.  So much so that we have agreed to work on a project based on this together.  But for all who do not, who are overwhelmed, who feel physically ill or in pain, why would we demand this of them?

Eye Contact

33 Comments

Posted in Autism, diagnosis, eye contact, Parenting

Tagged , , , , , , ,

The Problem with “Use Your Words”

Posted on October 2, 2013 by | 68 comments

How many of us have uttered those three words to our kids?

Use your words!

And yet, if your child is like mine, they probably do use words.  Perhaps they “script”, words we dismiss because we recognize them from a movie, or perhaps we hear the tone and recognize it as echolalia and therefore  ignore.  Maybe we think of the words as a verbal stim or maybe we hear that those words come from a teacher, the bus driver, another kid, a friend, us…  and again we dismiss them as meaningless.  But what if we are wrong?  What if all those words our kids are nobly attempting to use ARE communicating something, but it is US who cannot make the connection?  What if our kids do not learn language as we think of language being learned, but they are learning it, in their own way, on their own timeline?  What if all those words they keep using, the ones we are told to ignore or not reinforce by acknowledging, are HOW they are learning to speak?

I am currently reading Marge Blanc’s book, Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language
and these are but a few of the questions being answered.  One thing I have not yet seen or can find in this terrific book is any mention of Tourette’s.  I am curious to know the authors opinion on how Tourette’s factors into language acquisition or if it even does.  Marge, if you’re reading this, I’m hoping you’ll comment!

In those early, blurred years after Emma’s diagnosis I remember thinking that any language was good language.  And then my daughter began to say things, things I could not and did not understand and I was told, those are meaningless words, you must ignore them, you must not reinforce them.  But maybe, just maybe those words are the foundation for others that I and others will be able to understand at some point.  My friend Ibby, of the fabulous blog, Tiny Grace Notes, told me more than a year ago about the importance of not trying to do a word for word translation of the things my daughter said, but rather to lean into the words.  I couldn’t fully understand what she was telling me at the time, but slowly I have begun to.

Marge Blanc writes, “As we valiantly try to replace our kids’ echolalia, their natural language, we feel validated when they learn to say new things.  We teach our kids a dozen functional phrases and sentences and feel satisfied that we have taught “functional speech.”  The tragedy is that while IEP goals are met, children’s linguistic potential has been ignored – and undermined.  We have forgotten how to assess a child’s developmental language level and his capacity to develop generative language.  And we have also failed to consider that the functional phrases we’ve taught might actually interfere with his potential to develop language competence.  And in the process, the echolalia doesn’t go away.”

Now add to this idea the way we are taught to ignore those scripts, that we mustn’t give them any air to breathe as we will only encourage the proliferation of similar non “language.”  So we smile patiently and nod our heads and say…

Use your words.

But not those words.  Use these words.  The words I want to hear.  The words I am now going to repeat and have you say over and over with the hope that you will say these words, my words, in place of yours.  Isn’t that really what we mean when we say “use your words”?  Use words I want to hear.  Use words I give you, but don’t, please don’t use YOUR words.

Over a year ago I wrote about how Emma advocated for herself on the school bus.  You can read that post ‘here‘.  What I didn’t spend a great deal of time talking about was how she tried, repeatedly to “use her words” but was not listened to because they did not believe she understood what she was saying.  It was only after many attempts of using the only words she knew, “you’re going the wrong way!”  “Emma goes to a different school!”  and “you have to go this way!” that she began to scream and then bite herself and eventually punch herself in the face.  Even then, when she fell to the floor of the bus, refusing to get off, crying and hurting herself, even then they continued to not listen to the words she was saying and using and insisted she get off the bus.  It was only when one of the staff at her old school heard her and recognized her and thought to tell the driver that yes, she was correct and no longer went to this school, that she was on the wrong bus, it was only then that they dialed my number and told me my daughter was refusing to go to school, and as it turns out, rightfully so.  They had taken her to the wrong school.

When they brought her home she was devastated.  I will never forget the look on her face as she descended the steps of that bus.  Before her feet hit the ground I said, “You are so awesome Emma!  You told them this wasn’t your bus.   You told them they were going the wrong way!  I am so proud of you!”  Emma still talks about that morning, that morning over a year ago when she was “using her words” and no one listened.

Use your words.

Waiting for the school bus ~ October 2, 2013
*Em copy

68 Comments

Posted in Autism, language, Parenting

Tagged , , , , , , , , , , ,

Changing Our Thinking

Posted on October 1, 2013 by | 25 comments

I asked Emma for her permission to talk about language retrieval issues, and specifically to describe some of what occurred during her first session with Soma last week.  She said it was okay for me to do so.  I’m incredibly grateful to my daughter for being so generous with what is personal information.  She has given me her permission, but to leave it at that, would be wrong.  To not acknowledge what this means would be negligent at best.  She is unbelievably generous to allow me to share these things.  I do not know how many of us would be willing for another to share such personal things about ourselves, and the trust she has bestowed upon me, the trust that I will not betray her…  it is something I not only take very seriously, but need to acknowledge.  To say I am grateful does not come close to describing the feelings of appreciation and awe my daughter inspires.  If all human beings could take a page from Emma, both in her cheerful generosity in giving of herself so that others might benefit and her compassion and willingness to see the best in people, even when so many have said and done cruel things to her, this world would be a far better place for all of us.

I wrote about Emma’s first session with Soma ‘here‘.  What I didn’t write about was how after Emma pointed to a letter she was encouraged to say the name of the letter, just as her Proloquo2Go program does on her iPad.  She was able to do so without hesitation.  But when Soma put the stencil board down and asked Emma to say the next letter of the word she was writing, without pointing to it first, Emma would, more often than not, say a random letter.  Soma then picked up the stencil board and again without hesitation, Emma pointed to the correct letter and was able to identify it correctly out loud.  After Emma wrote a sentence she was invited to read the sentence aloud, but could not do so.  This is a sentence she’d just written, one letter at a time.  A sentence she’d created, yet was not able to read.  It is not then surprising that Emma is unable to read a random story out loud, even though she is perfectly capable of reading it silently to herself and fully comprehending it.  See related post about reading aloud, ‘here‘.

To see this broken down, to witness this at the level of single letter retrieval and not a whole word even, made it all even clearer to me.   Which isn’t to say that Emma will never be able to do this.  Perhaps at another point, perhaps once she is proficient in writing her thoughts and identifying a letter after pointing to it, one letter at a time, she will then be able to work slowly, patiently and without the anxiety of feeling expectations are being placed on her, perhaps then she will be able to come up with the next letter before she points to it and from there the next word and on it goes until verbal language can catch up to her written.  But for now, it is imperative that every single person who comes into contact with my daughter understand how detrimental it is for her to have these expectations placed on her and then to have the inevitable conclusions drawn about her comprehension and ability.

My daughter is nothing short of brilliant.  I am not saying this as a biased mother who is basing her thoughts on nothing more than some sort of convoluted tip of the hat to genetics, or a round about way of bolstering my own ego and intellect.  I am saying this because I have seen the evidence.  Since her diagnosis, Emma has been treated as though she were intellectually impaired when, in fact, she is intellectually gifted.  This is, I’m sorry to say, something I am hearing from others.  We have a growing population of children and people who are treated as though they are incapable, when in countless cases the opposite is true.  The onus is on us to change our current teaching methods and the therapies we are employing and to open our minds to the idea that we have gone about this all wrong.  This is what must change.

Soma & Em copy

25 Comments

Posted in Autism, Parenting, Soma Mukhopadhyay

Tagged , , , , , , , , , , ,

“Be Nice To Each Other”

Posted on September 30, 2013 by | 46 comments

“Be nice to each other” – this was the final sentence Emma wrote to Soma on Friday before we flew back home.  She wrote it in answer to Soma’s question, “Any message to the world?  To mankind?”

Be nice to each other.

We returned home late Friday night.  I was riding on a cloud of excitement, newly found realizations, solid, unequivocal confirmation and proof that not only is Emma completely aware of her surroundings, but she has profoundly wise insights into the world, other people and herself.  She is one brilliant girl.  She has managed to learn despite having almost no formal education, she knows her multiplication tables as though she’d been studying them for years.  She knows how to solve mathematical word problems, she understands things I have only come to understand very recently and her compassion for others is astonishing.  She has been spoken harshly about.  She has heard what others have said about her in front of her as though she could not hear or understand.  She knows what others think of her, and yet, she understands these things are said in ignorance.

So excited was I, that I slept fitfully, and Saturday morning awoke to blinding, crushing, devastating sadness.  I felt the weight, the enormity of my daughter’s life and my role in all that has happened to her these past nine years since she was diagnosed.  My mind latched on to each and every misstep, the mistakes piled up so quickly, one on top of the other I felt I couldn’t breathe.  I spent Saturday in a state of crisis.  I completely broke down.  And the thought that continued to blast in my mind was, “How will I ever find my way out?  How can I forgive myself for what I’ve done?  How does one forgive another who has made the decisions I’ve made?  In essence, how can you forgive what is unforgivable? And yet, she has.  And therefore, so must I.

Be nice to each other.

And here is the thing about all of this.  Berating myself, hating myself, NOT forgiving myself allows me to continue the cycle.  It wears me down, threatens to break me when I need to be strong.  But I also know that when I am overwhelmed with feelings, telling myself that I must not feel the things I am feeling, does not make them go away.  Tamping the feelings down, pretending they do not exist, none of that actually helps me move through them.  Criticizing myself for hating myself does not make me hate any less.  And so I accepted that this was where I was.  And for one day I sat with all those awful, painful feelings and felt them.  Neither pushing them away or adding to them by criticizing myself for having them.  I sat with them one excruciating hour after the next and allowed them to be.  And all the while I repeated Emma’s words, Be nice to each other. And I allowed that to include myself.  By Sunday morning I felt my strength returning.  I felt that old determination returning.  I could feel energy flowing and I knew.  I knew.  As long as Emma gives me permission to, I will tell all who will listen, at least some of what she is writing.

When I asked Emma yesterday if I could write today’s post using her words as the title she nodded her head, yes, and smiled.  Last night before going to sleep she said, “Mommy?  No school tomorrow?  I don’t like new school.”  And so I promised her, I promised I would do everything in my power to help her school understand, but I know I have one hell of a battle before me.  And I need every ounce of strength I’ve got in me.  But maybe, just maybe some of the video clips I have of Emma writing these things will have the power to change even a few minds so that they will be swayed and will come to understand what I have.  Not only is my daughter capable, she has a great deal to teach us, but all of that will be lost if we are not willing to open our minds and listen.  This is the non autistic limitation of our neurology.  This is our neurological deficit and we will have to work mightily to change that.

Emma at Halo – September 26th, 2013

Em iPad copy

46 Comments

Posted in Autism, Parenting, Soma Mukhopadhyay

Tagged , , , , , , , , ,

“I Want to Know What God Thinks About Autism”

Posted on September 26, 2013 by | 52 comments

*Emma approved this post before I published it.

Yesterday was our second day working with Soma.  And just when I thought I could not be more blown away by anything Emma wrote, she wrote the title to this post.  It was in response to a conversation about Mesopotamia, ancient civilizations, buildings and building materials, which led to Soma discussing the types of structures built, one being temples.  Soma asked Emma why people would go into a temple, to which Emma wrote, “pray”.  Soma then asked her if she went into a temple what would she pray about.  Emma then wrote, “I want to know what god thinks about autism.”  

I have to interrupt this to say, I am not a believer.  I had a moment, a very brief moment in my teens and again in my thirties when I so wanted to believe, I needed to believe and yet still could not really believe in any way that made sense to me.  God is not something I obtain any solace or strength from believing in, and well… truthfully, I’ve stopped trying.  I don’t need to believe.  Having said that, my husband and I talk about god, religion, spirituality, the practice of acceptance and staying present, meditation, doing the right thing, and what a power greater than ourselves means on any given day.  So there is a fair amount of “god-like” talk going on.  In addition, my mother is a theologian and has taught bible study classes for many decades.  She used to attend a Torah study and I believe does again now.  She is one of the most knowledgable and interesting people I know of to talk to about religion and god.

The point is, Emma has certainly been present to a great many conversations about god, the bible and religion.  But never has she said the word “god” let alone, used the word in a sentence.  And it must be said, we never thought to ask her…   When both children were still very young I bought a number of children’s books on a variety of religions, and made some general statement about the importance of learning and deciding for yourself what you believe.  We still have those books; I’ve never seen Emma look at them, but that doesn’t mean she hasn’t.  And anyway, as I said, it’s not as though she hasn’t heard a great deal of talk about God.

Later I asked Emma if she believed in God and she wrote simply, “yes”.

If there is a god, I’d like to know what god thinks about autism, too.  I’m guessing here, but I should think god is embracing and celebrating all neurologies.  After all, most people I know who believe in the existence of god believe that god created us the same and equal and beautiful beings, given the gift of choice.  We can choose to act with love, compassion and kindness or we can choose to behave in hurtful ways that cause tremendous pain and suffering.  Either way, according to those I trust and respect on the topic, God is always there for us, all of us, all the time, and without exception.

Em Texas

52 Comments

Posted in Autism, God, Parenting

Tagged , , , , , , , ,

Traveling Without A GPS

Posted on September 24, 2013 by | 21 comments

I’m traveling with Em.  We’re doing a kind of mother/daughter trip together, though not, as Em would like, to a spa where we sit around getting our nails done, (Em has fallen in love with the joys of a good pedicure) go swimming in heated pools that are like massive bath tubs and doing nothing else… that trip will have to wait.

And I made the mistake of opting out of the GPS system for the car I’ve rented, which means every few minutes Emma can be heard saying from the back seat, “Oh no!  You’re going the wrong way!”  And because I have no sense of direction, am driving in a state I’ve never been before, let alone city, she is correct.  We have been here less than 24 hours and have gotten completely lost, despite thorough directions from google maps (which suck, by the way, I’m totally blaming google maps) FOUR times!  This is not an exaggeration.

It seems I cannot drive more than a few miles without taking a wrong turn, end up inexplicably going in the opposite direction from where I meant and wanted to go.  So I’m like one of those annoying drivers who’s leaning forward, peering out the window, both hands nervously gripping the steering wheel and driving so slowly I’ve got a line of cars in back of me, pissed off and trying to get around me. But I won’t pull over because I don’t know where the hell I am and… Yeah.  That’s me in that car you’re honking at.  And that GPS system that I turned down, because really, at an additional 20 bucks a day or whatever it was, who would think that was a good idea?  Um…  it’s looking like a bargain, right about now…

This was not always the case.  When I was in my late teens and all through my twenties I lived and drove all over the place.  I lived in LA for three years, a city where you spend more money on your car than you do on your home.  So yeah, I’ve driven a lot.  But as I have grown older and my eyes are not as they once were, requiring glasses, my sense of direction (not that I ever had one) has gotten worse, not sure how that’s actually possible…  but it has…  so a GPS system, it turns out, is less an “option” and more a necessity.

But last night when we arrived, I was still thinking of the me that I was thirty years ago.  The me that took on New York City traffic without a second thought, the me that spent hours a day navigating Southern California’s freeway system, the me that drove all over the place, every day without hesitation, yeah, that me.

Turns out?

She’s gone.

Image representing Google Maps as depicted in ...

21 Comments

Posted in fear, mother/daughter, Parenting, travel

Tagged , , , , , , , ,

The Conversation That Isn’t

Posted on September 23, 2013 by | 39 comments

The biggest problem with the conversation regarding autism and Autistic people is that it is largely had without the inclusion of those who are being discussed.  When Autistic people attempt to join the conversation they are often told – the very fact you can speak removes you from the conversation because you are not representative of those who cannot and those who cannot speak are believed to have little if nothing to say.

When someone who is Autistic and does not speak, types to communicate, they are often discounted as not really being able to type, even when they are able to do so independently.  One of the many google search terms that come up repeatedly, leading people to this blog is “Carly Fleischmann fake.”  I continue to find people’s adamant disbelief, even when shown clear evidence of ability, baffling.    For those who do not know who Carly Fleischmann is, please go to her website and Facebook page.  She is a non speaking Autistic teenager who defies all the stereotypes about what it means to be non speaking and Autistic.  People insist that she is an anomaly, but go to a conference like TASH, Autcom, the ICI Conference or go to the resources page on this blog and read the many blogs and written works by non speaking Autistic people and you will quickly see that not only is Carly not a “fake” or a “hoax”, she is not an anomaly; she is in good company and one of many.

“…. a tendency among professionals to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a reevaluation of established practice.” ~ Speechless by Rosemary Crossley

Rosemary Crossley on the topic of IQ tests, writes, “Tests of intelligence purport to assess how well you take information in, and what you are able to do with it, on the basis of what comes out.  If nothing quantifiable comes out you are untestable.”  She then goes on to say, “What is surprising is that the results are assumed to reflect what the child and teenager are thinking and what they are able to learn, and are used as a basis of making decisions about their futures.”

So we continue to have a conversation about Autistic people, yet when those who can speak do so, they are discounted as not representative of those who cannot, and when those who cannot speak, type, they are doubted, believed to be a hoax or an anomaly and not representative of others who share their inability to speak.

Does anyone else see a problem with all of this?  Anyone?

Me and Em at the ICI Conference in July, 2013

Me & Em

39 Comments

Posted in Autism, disability, Parenting

Tagged , , , , , , , ,

Language Acquisition?

Posted on September 20, 2013 by | 44 comments

Yesterday I wrote about some of the problems inherent in asking children to read out loud.  You can read that post ‘here‘.  The comments have been uniformly terrific, extremely informative, and very helpful.  Ischemgeek wrote several comments that I’ve actually printed out and even copied and pasted into emails to a few teachers I know.  She wrote a terrific explanation and series of suggestions in answer to a question I posed asking for her thoughts regarding handwriting.  My question to her was slightly off topic from the original post, but if you read the comments you’ll see how the conversation evolved.

Another comment, from bjforshaw, reminded me of how when Emma was a baby she seemed to acquire two or even three word phrases (“chase me”, “go out”, “all done”, “play catch” “I donwannta”)  as opposed to individual words.  Bjforshaw wrote, “I dislike reading aloud because it is so different from the way I normally read and this makes it feel uncomfortable. My usual reading speed is fast, much faster than my speech, and I scan phrases, groups of words, even whole sentences. In contrast when I read aloud I have to plod along one word at a time.”

When I read his comment I had one of those “light bulb” moments.  You know, where you think – wow!  This reminds me of this other, seemingly unrelated thing, I wonder if there’s a relationship?  So I went to the internet to see if I could find any articles on the topic of language acquisition, but haven’t found any dealing with babies learning whole phrases and chunks of words at a time.  Not only have I not been able to find any articles written on this topic, but I cannot find many articles written about language acquisition and autism, specifically, that aren’t more than ten years old, which I find baffling. If anyone has relevant links, please send.

I have no idea if, for some, language learning is similar to the way bjforshaw describes his ability to read, but I’m curious now.  Could it be similar?  Has anyone heard or read anything about this?  For those of you who read in chunks and not the individual word, do you know or remember whether you also learned to speak this way?  In other words instead of learning one word and then building upon that word, did you learn a phrase or several words together?  Could this also then be related to scripts? I’m thinking out loud here, but I’m wondering if scripts are meaningful because they are learned chunks of language that come to represent more than the literal interpretation given by those listening. Do the scripts carry more (hidden) meanings to the person saying them?

Thanks again to all who have commented, and to those who intend to, thank you in advance.

Em types for an audience in Tampa, April 2013Em types with Pascal

44 Comments

Posted in Autism, language, Parenting

Tagged , , , , , , ,

The Pitfalls of Reading Out Loud

Posted on September 19, 2013 by | 89 comments

When Rosemary Crossley was here she spent several hours working with my daughter.  One of the many discoveries we made was that Emma can and does read very quickly, but if asked to read out loud, she will stumble and get so caught up in pronunciation I question whether she is able to comprehend what she’s reading at all.  I know I have trouble following the story.  Yet most schools ask children to read out loud, both as a way to assess what they are capable of, and also to make sure they are at the correct reading level.  If a child reads a first grade reader out loud with great difficulty, the impulse is to make the reading material simpler.  Except that if this is done with my daughter she will be stuck reading kindergarten and beginning level reading books for the foreseeable future.

I know Emma is able to read much more complicated texts than beginning readers.  I know this because I have seen her read with Rosemary and me very quickly.  I have witnessed her ability to read, not only faster than I can, but her ability to accurately answer multiple choice questions related to the text with ease when  given some resistance.  In other words, if she is asked to wait a beat, instead of being allowed to immediately point to an answer, her accuracy goes way up.  Without the pause she is just as likely to randomly pick any answer.  From Rosemary Crossley’s book, Speechless, “The resistance I provided slowed her down very substantially, and the quality of her output increased as her speed fell.  I gave Jan a picture of a cow and asked her to write me a sentence about it.  Instead she typed, THIS TYPING IS HARD.  I HAVE TO THINK.  That was, of course, the aim of the exercise.”

This idea of providing resistance is a tricky one to explain to people.  I have had some people say they just cannot understand why this would be necessary.  The only way I know of to better explain, is by comparing it to the way many, who are like my daughter, will perseverate on a word, or will rely on favorite scripts.  It is not that these scripts have no meaning, it is more that they are often difficult for others to understand.  If I hand Emma her iPad and ask her to type me a story, she will most likely write something like, “rollercoaster, kiteflyer, greenride, hurricane harbor, waterslide” which is also in keeping with what she might say out loud.

These words are powerful to her, they hold a great deal of meaning, but to most people, they are seen as gibberish.  If this then is used to assess her capabilities she will not be well served.  However if I ask her to type me a story and then hold one end of a rod while she holds the other end with her typing hand and types with one finger while I pull her hand back after each letter is typed, she might type, ““One day there was a boy called george. He had been in afight can’t tell you how he got into the fight but he was bruised all over.  He fought a lot and his teacher was very angry.  The next day he was all purple and his mother said you can’t go to school looking like that.  The very clever boy covered himself in flower and his teacher thought he was sick and sent him home.  The end.”  

Incidentally, that story is one Emma wrote when Rosemary was here working with her and is typical of the sorts of things she can and does type when given the kind of resistance I’ve described.  (You can read the entire post I wrote about her session with Rosie, ‘here‘.)  However, ask Emma to read out loud a story similar to the one she typed and she will have a great deal of trouble.  What she is capable of is far greater than what one might assume from what she verbalizes, whether that means reading out loud or with spontaneous speech.  Ask Emma to sing the lyrics of a song, in Greek no less, and she will get much of it right, but that’s a whole other post.

But how does one convince others that this is so?  Particularly when many are trained and told that reading out loud is a good indicator of ability.  There is surprisingly little written on the topic of the problems with reading out loud for those who have spoken language and word retrieval issues.  Again, in Rosemary Crossley’s book, Speechless, she writes, “her reading aloud was bedeviled by the same word-finding problems which affected her spontaneous speech, preventing her reading with any fluency.”

Obviously there needs to be more written about all of this.  The closest I have found, other than Rosemary’s book, Speechless, is a blog, The Right Side of Normal,  that concentrates on “right brained children”.  And on that blog, this post specifically, Silent Reading versus Reading Aloud, which deals with, at least some of what I’m discussing here. If others know of other resources discussing any of this, please do leave me links in the comments section.

Rosemarie Crossley

Rosie

89 Comments

Posted in Autism, Parenting, reading

Tagged , , , , , , , , ,

When We Say Things We Do Not Mean

Posted on September 18, 2013 by | 44 comments

Erratic speech.  Unreliable language.  These are all words to describe what many, like my daughter, experience.   Speech that does not represent what is meant,  but that people hear and make assumptions about the person based on what has been said.  Rosemary Crossley in her book, Speechless talks about nominal aphasia – “One of the familiar aftereffects of stroke, for example, is not being able to say what you mean.”

Many years ago I became friends with a man who’d had a stroke, leaving him aphasic (meaning he was mostly unable to speak, though he understood what was being said to him.)  Every few months my then boyfriend and I would pick him up at his apartment and take him somewhere.  I don’t remember if he could type his thoughts, this was long before the advent of the iPad, and as he could not hold a writing implement, this was not something he did when we were together.  I do not remember him ever uttering a single word.  Prior to his stroke he had made a name for himself as an avant-garde theater director.  In the theater world he was thought of as a god.  After his stroke he went on to direct a number of works with many famous actors.  People were willing to believe he could not only understand what was being said, but that he had a great deal to say, even though he could not verbalize his thoughts.   His name was Joseph Chaikin.

For those who are Autistic and also have unreliable speech, people tend to take what they say at face value and believe their speech is indicative of their thinking and thought process.  Yet this could not be farther from the truth.  Many are willing to dispense with their disbelief when someone is famous and once spoke, but most are not as willing to believe when someone has word retrieval issues, that they are capable of more than what we hear them say.  “…children who have never been able to speak fluently have not had a chance to establish themselves.  They have not had the typical infant’s experience of controlling the world with their speech.” ~ Speechless by Rosemary Crossley

And as a result they also do not have the same types of interactions with others as those who have more fluent speech.

“Because our judgments of intellectual capacity, both formal and informal, are strongly tied to speech, a child who says the wrong words, who gives “silly” answers when asked questions, is likely to be seen as stupid.  A child who can never find the word he wants, or a child who cannot make his tongue do what it should, can come to associate speech with tension, embarrassment, and failure.” ~ Speechless by Rosemary Crossley.

“Children with severe speech impairments often develop behavioral problems. These may simply be a result of the frustration inherent in not being able to say what you mean, but this frustration may also be exacerbated by the reactions of the people around them.” ~ Speechless by Rosemary Crossley

One young man who had unreliable language and who Rosemary worked with typed, “I dont make sense and people think Im senseless.” Speechless by Rosemary Crossley

Typically, when someone speaks to us, we believe that what they say is what they mean to say.  We respond  accordingly.  When people tell me something Emma has said and how they don’t understand why she then became so upset because they were doing what she told them she wanted, I understand.  I understand how frustrating that must be, for her, for the other person, for everyone involved.  Emma does not have phrases like, “Oh I know the answer to that, but I can’t think of it just now” or “give me a minute, it will come to me” or “it’s on the tip of my tongue” or “I just had it, the word was right there” or “what’s the word, you know it sounds like ________?”  or “wait, I know this, I know this…” or any of the other things most of us say when we know something, but the words have momentarily escaped us.

Communication is not just speech and for some, spoken language is an unreliable method of communicating.  Finding a more reliable method then becomes essential.  For my daughter, typing is proving to be a far more reliable way to communicate.  And as it turns out, there are a great many others who are just like her.

Waiting

Related articles

44 Comments

Posted in Autism, language, Parenting

Tagged , , , , , , , ,

In Answer to – Medication?

Posted on September 17, 2013 by | 10 comments

A number of people wrote in on the post, To Medicate or Not with their experiences.  The post was not about medicating autism, but about some of the co-morbid diagnoses that many people who are also Autistic  have.  Quite a few people wrote about managing depression, anxiety, stress and related issues.  Some wrote about how they began trying different medications in their late teens…  “I started medication at about 19…  I started with Prozac and it went well for a while but over time it stopped working.  It did make me feel better at first.  From there and over the years, I have tried many different antidepressants for my anxiety- Prozac, Paxil, Zoloft,Trazadone for sleeping, Zyprexa, Cymbalta, Welbutrin, Effexor, and Nortriptaline.”

Many parents wrote about how they agonized over the decision to try medication and almost all of them said it was done as a last resort.  Both Autistic parents and parents who are not autistic said similar things about their decision to medicate their child.  One person wrote, “my autistic child is on ADHD meds and has been since he was four. AdderallXR until last year, now Vyvance (same med with less appetite suppression). Clonidine at night. He wants to be on them. He has told me he feels more creative and happy with his mind not looping fifty things at once.”

Another wrote, “I had been fighting the medication for a few years.  I have had anxiety since I was little.  I had the doctor refer me back to one of my psychiatrists who is willing to talk and if necessary provide a prescription.  This time we tried combining medications.  Welbutrin seemed to help a bit so we tried things like Ritalin to help increase its effectiveness.  I was able to focus much better and things seemed to go well but I got severe heart burn as a side effect of the Ritalin.  We tried Dexadrin next but it didn’t work.  I gave up for a bit and then discovered Buspar.  It is an antianxiety drug but not in a class like valium etc which are addictive. ”

Lots of people wrote about having to try many medications and often combinations of things before they found what worked.  And a number of people wrote about being judged harshly by others either for taking medication themselves or for deciding to give it to their child.  One person wrote, “…they do not know.  They pass judgment, but have not lived the experience.  They make comments and say things as though they have the answers, but they don’t.  They  don’t know what it’s like.  They can’t.  I’ve learned to say nothing and ignore the mean comments and loud whispers.”

Another wrote, “I don’t tell people anymore, because I’m tired of their uninformed criticism.”

Again, thanks to everyone who wrote about this.  Really appreciate the honesty and willingness to share your stories.

10 Comments

Posted in Autism, medication, Parenting

Tagged , , , , , , , ,

To Medicate or Not?

Posted on September 16, 2013 by | 39 comments

It has been suggested I write a post about medications, both those prescribed and given to Autistic children, as well as those taken by Autistic adults.  This is not a topic I have any first hand knowledge about.  We have not given our daughter any medication, other than melatonin at night to aid in sleep, which has been nothing short of miraculous, and during those unfortunate years when I thought or hoped massive amounts of homeopathic tinctures would “help” her (they didn’t) and later the dozen or so vitamins recommended by the naturopath, we have managed to steer clear of medications.  (By the way, magnesium is helpful with constipation.)  I also have to quickly add, we have been able to steer clear of meds because our daughter does not exhibit any clear need for the medications currently available.

Personally I don’t like taking even aspirin, forget anything more hardcore, but I also am coming from a privileged vantage point.  I don’t have debilitating depression or anxiety or other issues, which would make taking medication a good idea.  The one time in my life when I was depressed and bulimic, Prozac was prescribed.  My reaction to it was less than ideal.  Even taking something as benign as ambien has a negative effect after more than one night on it.  I seem to be extremely sensitive to drugs and often have an atypical response to them.  With ambien, if I take more than half the prescribed dose I become so depressed I can barely function.  As a result I avoid taking anything, even if prescribed.

But I know people who do and have taken medications of all kinds and to say that it is optional, is being overly simplistic.  For people who need medication, things like antidepressants, or meds for anxiety or other issues that affect their ability to function optimally, it is profound the difference the right medication can make to their quality of life, their ability to wake up in the morning, their productivity level etc.  For those people, medication makes the difference between a bare, brutal existence and being a vibrant, active being who is fully in this world and able to enjoy it.  But what about those who are Autistic?  What is their experience?  Is it similar to those who are non autistic?  Is it the difference between barely scraping by and being able be fully present, or is it something else?

So I am asking for your help.  Anyone who has any first hand knowledge, whether it is you taking the medication, giving it to your child, or if you were given medication as a child, can you tell me what you take/took/were given/ or give to another and how it affected you?  Was it a positive experience, and if it was or wasn’t, exactly why?  Do you respond to medication atypically?  Did you have to experiment?  If you are a parent, describe your decision to medicate, what was the outcome, did you feel it helped or didn’t help?  Did your child notice the difference?  Any and all answers will be quoted anonymously unless you tell me otherwise or if you leave your comments below, I will only use whatever name you used to comment with unless you tell me otherwise.  If you prefer to email me, please do:  emmashopeblog@gmail.com.

Thanks so much everyone.  Really appreciate the willingness to share your experiences with me.

39 Comments

Posted in Autism, medication, Parenting

Tagged , , , , , , , ,

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…

49 Comments

Posted in Autism, Parenting, violence

Tagged , , , , , , , , , ,

The Conversation Continues…

Posted on September 12, 2013 by | 9 comments

The comments continue to pour in, both through email and on yesterday’s post and the post from the day before on the topic of violence and coping when overwhelmed and overloaded.  A number of parents have emailed that a behavioral program helped tremendously and a few wrote about various medications they’ve (almost always) reluctantly given their child as a “last resort”.  One parent wrote:  “I had to go to the ER because he broke my nose and when the doc saw the bruises on my arms and my broken finger they called social services.  I was told my child would be taken from me.  Another doc prescribed _____  (anti-psychotic drug) and told me it was the only shot I had at keeping my son with me.  Sometimes the choices we parents are given suck.  I never went back to the ER even after he broke two ribs and my toe.  Years later he was able to type that three kids were bullying him on the school bus and had been for years.”

Has anyone had experience with being given a behavioral plan?  Did it help?  If it did, what was it exactly?   And if it didn’t, and you don’t mind sharing about it, what was your experience of it like?  Did anyone have drugs given to you as a child and what was your experience with that?   As always, I will not use whatever name you give unless you leave it in the comments section of this blog or give me explicit permission.

Feministaspie wrote:  “The adults around me would tell me to take deep breaths, count to ten etc, and while I knew they meant well (and frankly, that was a much better way for them to deal with me than some of the other things I’ve read online, so I’m lucky really), that sort of thing didn’t really work for me. This was because at the time, I’d basically go into fight-or-flight mode so I absolutely was not thinking about that at all. I think it might also be to do with taking things literally, because apparently I’d just scream the numbers 1 through 10 at whoever told me to count, which obviously didn’t help matters. In hindsight, perhaps a more detailed plan was needed as far as that was concerned!! This made me feel really frustrated because that sort of thing was supposed to help and it didn’t and I felt like it was completely hopeless.”

Ashmire wrote:  “I’d also add that sometimes there is kind of a feeling of powerlessness, of knowing that no matter how bad I hurt someone I don’t/didn’t have the capacity to hurt them as much as they are hurting me, because they are hurting me with emotions and I can only use physical damage which just doesn’t, can’t, ever, inflict as much pain as emotions can.”

bjforshaw wrote:  “As for what helps, I would say that being given space is paramount. Confronting the violence feels like being cornered and makes it worse. What helps me is whatever makes me feel safe and unthreatened. I’m not able to speak or even type (I hate to think what effect my pounding would have on my keyboard) but as long as I’m not pressured I will be able to talk about it after I calm down. It has to be in my own time, on my own terms. That’s when I can start to explore the causes, the triggers.”

In his blog post, Violence as a Means of Expression, bjforshaw writes: “Why do I do it? That’s a very important question. I am usually able to communicate effectively but emotion is a minefield: I have alexithymia which means I have great difficulty identifying and describing my emotional states. Strong emotions, especially negative ones, are very stressful. Add to that the fact that I become practically non-verbal when under stress — words are in my mind but I can’t get them to come out of my mouth — and you have a recipe for disaster. I’m not able to communicate my state of mind or my immediate needs which adds to the sense of frustration.“

9 Comments

Posted in Autism, Parenting, violence

Tagged , , , , , , , ,

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

51 Comments

Posted in Autism, Parenting, violence

Tagged , , , , , , , , , , ,