Tag Archives: Anxiety

Food: Friend or Foe?

Posted on March 26, 2015 by | 16 comments

Food understands emotions in ways no words can, but sometimes the body disagrees and chaos ensues.  Mind begins to roar and everyone feels misunderstood.  Trying to appease all parties is impossible.

Have you ever felt full, but ignored the body’s message and eaten more or eaten foods your body is not friends with?  Do certain feelings prefer certain types of food?

Understanding that some foods emotions are in love with are enemies to the body is a devastating realization.  Being kind to all involved is challenging and maybe only a few people have truly accomplished this.

Pancakes!

Pancakes!

16 Comments

Posted in Autism, autistic, Gastro-Intestinal Issues

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Time To Dance

Posted on March 24, 2015 by | 12 comments

Hearing music alleviates anxiety and welcomes dappled drops clasping gleeful feelings, radiating inward and outward simultaneously.  Like bursts of intense flavor, music explodes in the body.  Only a few stoic souls can ignore its command to move.  Dancing is the healthy choice.  Turn on your favorite music and give yourself permission to become a part of those notes.

12 Comments

Posted in Autism, autistic, Autistic Blogs

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Beep. Leave a Message

Posted on March 19, 2015 by | 25 comments

Beep.

Waiting for a message that cannot find its way

from brain to muscles

that connect to sounds we know to be

recognizable words with understood context.

They elude, slipping and sliding

they have no legs

slithering in the muck of misunderstanding

those words that manage to escape from my mouth are heard,

but baffle.

 

Battling it out for recognition are the silent thoughts that are not

“you need to take a turn to share

“you have to wait our turn

“you want to go fast?

“you have to share”

Words, words and more words.

She has language they say, but the language she shouts is not a language at all

buffering frustration, relieving anxiety, clouding meaning

I’d whisper if I could

but I can’t.

comment-512

25 Comments

Posted in Autism, communication, language

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An Autistic Child is Murdered

Posted on November 6, 2014 by | 45 comments

Another Autistic child has been murdered by one of his parents.  This time it is a six-year old, little boy named London McCabe.  London joins a growing list of Autistic children who have been murdered in recent years.

A psychology professor who runs an “education” group for mothers of autistic children in California said, “quite frankly, I am surprised this doesn’t happen more often.”

Wow.

“I am surprised this doesn’t happen more often.”

The casual nature of this comment stunned me.

She then went on to say, “These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated.”  This horrifying statement is untrue, but beyond that, the suggestion that if our feelings are not reciprocated, it makes sense that we become murderous, is to make us so narcissistic, so incredibly monstrous as to be unbelievable.   This is Bruno Bettelheim’s famous “refrigerator mother” theory reapplied to Autistic children and it is just as awful in this new version as it was in the original.

Most Autistic children feel love for their parents, just as most non-autistic children do.  Even when their parents behave horribly toward them, even when they’ve been treated with contempt, ignored, bullied, ridiculed and publicly shamed by those who say they love them, even then, most children still love their parents.  As they grow older many may have more complicated feelings of despair, abandonment, become distrustful, anxious and terrified.  The idea that Autistic children do not feel intensely is an outrageously, misinformed idea.  Just because someone does not reciprocate in a way non-autistics understand, recognize or expect does not mean the feelings do not exist. 

It is extremely disturbing to read such a statement coming from someone who is treated with deference and as though she is an authoritative voice on the topic of autism and Autistic people.  This professor is one of a number of people who has a degree in psychology and has made inaccurate, misinformed and mistaken statements about autism and Autistic people, yet none stop to ask what the psychological damage is to the Autistic children and adults they demonize with their incorrect statements, not to mention the impact such statements have on a misinformed public.  Unfortunately, few seem to be asking any questions about any of this or even bothering to find out if such statements are true, including the newspaper that published her comments.

There is an increasing number of Autistic men, women, teens and even younger people who are writing about their experience of life, their relationships and the world.  I am surprised when I meet someone in the field of autism who does not follow at least some of the blogs so many Autistic people are writing.  The Resources page of Emma’s Hope Book has dozens of links to Autistic people’s writing.  The first 28 blogs listed are written by non-speaking Autistics.  One of those people is my daughter, Emma.  After a presentation Emma gave in New York City a few months ago, she and I had the following conversation:

Emma:  I hope people will question what they have been told.
Ariane:  I do too.
Emma:  Horrible ideas about people, cause many to do terrible things…
A little later in that same conversation, Emma typed, “Worry and fear are fueled by furious words spoken harshly.  Humor soothes, shining sunny rays spreading hope.”

As the mother of an Autistic daughter who cannot communicate fluently with spoken language, but communicates beautifully by typing, I am continuously shocked by the inaccurate information that is rampant on the topic of autism and Autistic people.  Yesterday Emma typed, “Understanding that all human beings want connection is natural and fundamentally human.”  And last week Emma wrote, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

For people who do not have the ability to communicate with spoken language and/or have sensory issues that impact each individual differently, expecting them to respond the way people who do not have any problem speaking and have never been assaulted by their environment, is relying on a false idea.  It is this false idea that continues to misrepresent so many.  It is this false idea that serves to hurt Autistic people.

The psychology professor told NBC News that mothers do not have the experience of their love returned by their child.   “That is one of the most difficult things for mothers” she told the reporter.

If this were true, it would be hard.  Years ago, when I once believed a great many things about my daughter, that I now know are not true, it was an awful feeling.  But it is far worse to be that child who loves, but is believed incapable of love.  It is far worse to be so thoroughly misunderstood, to be constantly misrepresented in public, to be thought so problematic that people sympathize with the mother who murders you… that is far more horrific than anything I will ever experience in this world.

London McCabe

London McCabe

45 Comments

Posted in autism experts

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Intention

Posted on September 9, 2014 by | 14 comments

Yesterday we had an interesting discussion about the word “intention.”  The word was brought up innocently enough.  It was used in the context of asking about a larger project Emma has been working on.  “What does having intention mean to you?” Emma was asked.  

“To have intention is a skill.  To have intention is a hurdle to jump over,” Emma typed.  

I was sitting in the room as this conversation occurred, but was not part of it yet.  I was surprised by Emma’s answer.  I have never thought of intention as a skill or a hurdle.  Instead I’ve always thought of intention as being goal oriented.  Then Emma wrote, “the mind does not always process it correctly.”  

And I realized I have a very different idea of intention.  An idea of what it means to set out to do something and then to do it.  I come at the word from the point of view of someone who has not grappled with intention as daunting.  I have not experienced the word as a series of frustrations, not typically.  Sure every now and then I intend to do something, I set out to do it and find I do not have enough information or am not skilled enough or realize I need to do a whole list of other things first before I can accomplish what I had hoped.  But this is different from what Emma was talking about.  

“Is intention easier for you while you’re going through it, or later afterward when you are looking back?”  Emma was asked.  

“If I think too much about it the fear is anxiety,” Emma wrote.  

Richard said that what he was hearing Emma say was that the word “intention” means something that we do not necessarily mean.  He went on to say that if someone who speaks and says things that they don’t mean a great deal of the time, he could see how “intention” would be anxiety producing.

And as I listened to this exchange I reflected on how I define “intention” from my perspective of relative ease with spoken language.  As someone who has never considered intention a “skill,” but instead as a given and even an expectation, one I’ve not spent much time considering, my daughter has once again given me a great deal to think about.  This is the very essence of privilege.  Having something, being so used to having it that I do not even know I have it…  unless it was taken away from me or when someone else reminds me of how much easier it is for me than it is for them.

“To have intention is a hurdle to jump over.”

intention

14 Comments

Posted in Autism, Parenting, Speech

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Using Words to Describe What Cannot Be

Posted on July 4, 2014 by | 4 comments

This morning, in answer to the question, “What shall we talk about?” Emma wrote:

Today I am going to talk about using words to describe things that cannot be described.

How can it be done?

It is the poet’s attempts that come closest, but even then, much is left to the reader’s interpretation.

Poetry becomes an interactive experience then, with the poet having to cede all control of words created.

Real creating asks question of all.  The answers are unknowing.

From Ariane:  Last night I dreamt I could not speak.  I was at the airport, leaving for the Far East and realized I had left my passport at home.  I kept reminding myself this was a dream and that I could recreate the story line.   I didn’t have to stay in the feelings of intense anxiety the dream was provoking.  I could speak if I could just change the dream. I didn’t have to follow the dream’s labyrinth.  Straining against all logic, I tried to fly, literally, back home, but kept being pulled back into heavy traffic and the anxiety of knowing I would never make it home and back to the airport in time for my flight.  Not being able to use my voice to tell the cab driver where I needed to go, without pen or paper to write, I felt intense frustration and then rage.

Knowing I would miss the flight, knowing my family was at the airport waiting for me, and the nagging, ongoing critique of how foolish I was to have forgotten such an essential document as my passport made me finally wake up.  It was one of those dreams where you are so horrified by it, waking at three in the morning becomes the more attractive choice, superseding the desire to continue sleeping and the knowledge of the inevitable consequences of waking at such an early hour.

Those feelings, like so many incessant and blaring alarms, jangle the nerves, and linger long after sleep has yielded to wakefulness.  And then Emma wrote the above and I was reminded, once again, of how often words fail us.  How often things said are misinterpreted, or said in ways not meant, or how even for those of us fluent in spoken language, words can become a kind of cage from which we cannot and do not easily escape.

Richard has been editing the video of our presentation.  Hoping to post it over the weekend or on Monday…

Emma chose this image after typing in "words" into Google search

Emma chose this image after typing “words” into Google search

4 Comments

Posted in Autism, communication, Parenting

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Emma Discusses Biting

Posted on February 10, 2014 by | 60 comments

Emma bites herself, occasionally pulls her own hair and less frequently will smack her head into the wall or punch herself in the face.  I hesitated writing about this on such a public forum because… well, because it is so public and people come to this topic with a great many strong feelings.  But Emma asked me to “put it on the blog” so I am, though with some ambivalence.  I ask that anyone who chooses to comment do so with the love, care and compassion you would hope others would have for you, were you to talk about things that are so deeply personal.  I will just add that Emma is incredibly courageous and I have nothing but admiration for her desire to speak so publicly about a topic that brings up so much distress for so many.

I asked Emma if she would be willing to discuss what is going on when she bites herself.  This is something that has happened nearly every day at her school this past week.

“I am anxious about angering those who are watching, but can’t control my aching feelings of distress.

“Biting my arm is helpful in giving those difficult feelings a pain I can control.  Getting mad at me makes it worse.

“Trying to force me to stop does not change how badly I feel, just adds to shame I already have.

“I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.

“Fear takes over.

“Stress becomes impossible.

“I need helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience.”

*I asked Emma if she could sense people’s emotions and if that added to the overload.

She wrote, “Yes, it makes it worse.”

Emma ~ 2011

Emma ~ 2011

Related Posts:

 Self Injurious Behaviors ~ Let’s Discuss

Different Neurology, Different Perception

60 Comments

Posted in Autism, communication, controversy, Parenting

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An Interview With Emma About Stimming

Posted on January 2, 2014 by | 84 comments

What follows is an interview I conducted this morning with Emma about stimming.  Emma patiently tried to explain to me what stimming is like for her.  

A:  Is it okay to ask you some questions about stimming?  (For those of you unfamiliar with the term, stimming is a repetitive action or verbal output.)

E:  Stimming is fun.  And I am in calming and obedient service to those who are in charge.

A:   Are you being facetious when you write “obedient service to those who are in charge?”

E:  (Smiles)  Yes.  (Laughs)  The stim is a great way to roam around feelings that are too intense.  You treat me like a baby.”

A: Are you speaking specifically to me or are you using a more universal “you”?

E:  All people out there.  Bloated feelings despair and anger me.  Almost all feel too much to manage and I cannot be present all the time.

A:  Can you tell me more about stimming?

E:  I am not able to write about stimming because words cannot describe it.

A:  Can I ask some specific questions about it though?

E: Yes.  (Leans over and gives me kisses on my cheek.)

A: Is stimming ever not fun?

E:  Yes.  When feelings are too extreme, even a good stim won’t help.

A:  Is there anything that will help?

E:  A lot of patience and love.  Acknowledge my attempts to self-care and do not cause me more pain by trying to change or control me.

A:  What happens if someone stops or tries to stop you from stimming?

E:  It makes thick feelings worse.

A:  Do you ever feel stuck in repetitive loops?

E:  Yes, but so do others who are not autistic, but they are called passionate and are looked up to instead of looked down on.

A:  Yesterday you wrote: “Raging beasts of pain masquerading as stims cause many to misunderstand.”  Can you elaborate on that?

E:  Stims alter the persistent anxiety of life so that I am able to function as well as I am.

A:  So you weren’t saying stims are painful as much as that they help you cope with the pain and anxiety you often feel?

E:  It is impossible to describe to all who have not experienced a lot of distress.  Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence.  People treat those they believe stupid, very badly.  I am not stupid.

A:  I know you aren’t!  You are the smartest person I have ever met!!

E:  (Smiles and squeezes my arm.)  I am intelligent and cannot speak with the same brilliant words that are in my mind.

The timer goes off.

E:  Now we are all done!

A: Yes we are!  Thank you Emma for your patience with me and helping me understand.

Addendum:  I asked Emma just now if I could ask her one more question.  She told me that I could.

A:  Do you like the word “stimming” ?

E:  No.

A:  Is there another word you’d prefer?

E:  Yes, but words are not as meaningful to me as they are to those who talk all the time.

A:  If you could choose any word other than stimming, what would it be?

E:  Self-care

Em with her string!

Em with her string!

84 Comments

Posted in Autism, communication, Parenting

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Travel, Friendship and Sensory Overload

Posted on December 16, 2013 by | 34 comments

A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport.  Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that.  Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.

It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely.  But the wipers made a scraping noise that I found almost intolerable.  Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board.  It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter.  I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.

As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch.  It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry.  I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.

Ib began to very quietly and gently tell me what she was about to do, before she did it.  So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down.  Ibby was modeling, actively demonstrating what I need to do for my daughter.  She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.

As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person.  I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life.  Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person.  Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again.  However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.

As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight.  All the things I do without thinking, without questioning, things I take for granted.  But I also was aware that this relief is not what others, others like my daughter, necessarily experience.

34 Comments

Posted in Autism, friendship, travel

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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

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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.”

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Posted in Autism, Parenting, violence

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Memories Evoked

Posted on August 30, 2013 by | 18 comments

I enter the subway car.  To my delight there is an empty seat near the door.  I sit, rummage through my bag for my book and begin reading from where I left off, but the words are blurry and I cannot concentrate.  I am aware of a powerful odor emanating from the person seated next to me.  I close my eyes and try to concentrate on breathing through my mouth.  My stomach clenches and my eyes begin to water.

I’m five years old.  Mrs. Williams is rustling about in the other room.  The pain in my chest is as much from the ache I feel because my parents have left on their yearly trip as it is from my fear of the woman who has been hired to take care of us for the next few weeks.  Mrs. Williams with her coiffed hair and antiseptic smell, everything about her is no nonsense, business like, a kind of grim resignation that oozes from her every pore.  When angry she uses her hand, like a paddle, it comes down swift and seemingly without emotion, as though the pain I feel upon contact has nothing to do with anything: arbitrary, remote, senseless.

I hate Mrs. Williams and my anxiety and sadness that my parents have left us, even for only a few weeks adds to my hatred of her.  She crinkles and rustles when she moves, her skin hangs from her body like an ill-fitted suit, she smells of soap and perfume that make me nauseous.  She is stocky and seems well rooted to the ground, her movements are steady and purposeful.  She rides out the time my parents are gone like a convict doing time.  I can find nothing pleasant about her.  Just thinking about her fills me with fear.   Her dislike for me and my sister is all the more apparent when my brothers are around as she obviously dotes on them and shuns us.  If ever there is a dispute, it is my fault, no matter that I am the youngest with siblings a full eight and six years older than me.   

We are told she had a son sent to Vietnam who never returned.  We are told it is because of this son that she adores my brothers.  I take this information in stride.  It is fact.  I am representative of something unwanted, something I do not and cannot understand.  She is particularly concerned about my bowel movements.  She takes note of them, even going so far as to stand guard outside the bathroom listening for sounds of success.  As I sit on the toilet I imagine her ear pressed to the door.  Why this is important is something I can’t figure out, but that it is, is evident by the reports she feels compelled to give my older siblings.  Now my brothers and sister are on high alert.  My bodily functions are examined, discussed, they have become a topic.  The more I am closely observed the more  anxious and fearful I become.   

I grip my book tightly and try hard to breathe out of my mouth. I glance over at the woman next to me.  Her eyes are closed and I realize she is asleep.  As the train careens through the darkness, her body sways with its motion.  The train turns.  She leans into me, the smell of soap, antiseptic, and some other odor I cannot identify, but that reminds me of those weeks once a year when my parents left us in the hands of someone who should not have been caring for small children, is over powering.  She is unaware of me or the memories her presence has evoked.

I think of my children.  I see the look of anxiety on my daughter’s face when she says, “No, not going to Katie’s class.  That is the old school.  Emma goes to new school.  Emma goes to new school with Mommy.”  And all I can hope for is that her new school will not be staffed by anyone whose presence gives her cause to remember them decades later with anxiety and a feeling of plummeting through an endless darkness.

Visiting the new school

New School

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Posted in fear, Parenting, sensory issues

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Another Way to Silence – Shame

Posted on June 11, 2013 by | 26 comments

Shame has a long and twisted history.   Over the centuries it has been used to coerce, to convert, to make people compliant, to keep people in line.  I’m not sure there is a “healthy” aspect to feeling shame, though I may be in the minority here as this article states, “Embarrassment and shame are important in the regulation of social behavior. Both emotions tend to occur when rules have been violated.”  But what if those “rules” are not actually in place for the good of ALL?  What if those societal “rules” serve the majority, but actually are a disservice to a minority?

The argument that without shame we would all resort to violent, unethical and amoral behavior is one I don’t agree with.  Plenty of people behave badly who are filled with shame, often as a direct result of the burden of shame they live with, but usually those who feel tremendous shame hurt themselves more often.  I question how often shame, actually motivates us to respond in positive and constructive ways.  In most cases, it seems to me, shame is less a controller of bad behavior and more an instigator of self-betrayal and self harm.

Shame is what people feel who have been on the receiving end of violence, violations, betrayal and abuse.  Numerous studies have linked shame with depression, suicidal ideation, post-traumatic stress, rape and incest.  The very people who could actually use a little shame appear to be without, while those they victimize carry the vast portion of it.  In these cases, shame is the emotional equivalent to metal restraints, intended to keep people in check, compliant and silent, particularly when used on children or a group of people who are already in the minority.

Many of the methods used, with supposedly great success, on Autistic children, has created a population of adults who feel tremendous shame, lack self-esteem, feel inferior, have anxiety, live with ongoing debilitating stress, all of which exacerbates the very “behaviors” these therapies attempted to remove.   The unending destructive cycle shame creates, does nothing positive for anyone, least of all our children.

I believe shame keeps us from flourishing.  It causes us to doubt, to become hyper aware, self-critical of our desires, our urges, our instincts.  Shame makes us feel incapable, unable, frozen and of little value.  From my perspective, shame is far more damaging than it is “healthy”.  Shame is exactly what I do not want my children feeling.  Ever.  In fact, shame is a warning sign that something has been taught improperly.  If either of my children exhibit shame about something, it is a signal that more needs to be discussed.

I do not want my children behaving in a certain way because they feel shame if they don’t.  I want my children behaving in a kind and loving manner towards themselves and others because they have learned it feels good to do so, because they have come to see that self-seeking, hurting others, gossip, betrayal and acts motivated by resentment and vindictiveness lead to more harm and like-minded behavior. All behavior is infectious.  All behaviors, good or bad can provoke others to do the same.  I am not naïve enough to believe it’s a given, but I do know that I like myself far more when I am kind and being of service than when I’m not.

I hope my children are learning the antithesis of shame and silent compliance, which is a strong sense of self-worth.  I want them to know now, while they are still so young, the beauty and joy of a healthy sense of self, that wonderful feeling of liking who they are as human beings, that feeling we are born with, but that over time can be taken from us.  I want my children to be in touch with those wonderful feelings of curiosity, awe and joy, so that when they make mistakes they aren’t destroyed by them, overwhelmed with shame and become silent.  I want to bolster them up, reassure them, encourage them, support them, so one day, they will be able to give hope and encouragement to someone else who may desperately need it.

Emma – three years old – 2005 

2005

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Posted in Autism, Parenting, Self Injurious Behavior

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When the Words Don’t Match

Posted on January 24, 2013 by | 37 comments

The other night Em woke up at around 2:00AM crying.  She kept saying the same words over and over.  It was a kind of script, about an indoor playground that I used to take both children to when they were toddlers.  It is a playground that has been closed for more than six years.  “Mommy has to look.  Daddy has to find new Sydney playground.  The tickets are broken.  Mommy has to fix it.  Oh.  You want to go to new Sydney playground!”

Do not try to translate this.  Lean into the emotion, what is she telling you?  Forget the actual words, the individual words are less important, it’s the emotion, it’s the intent… 

This is what I’ve been taught.  I’ve paraphrased the exact words my friend Ibby actually used, but it captures the general idea of what she has reminded me of more than once.  It’s an important concept and one that I didn’t readily understand at first.  In fact our initial conversation went something like this –

Ibby:  Do you speak another language?

Me:  What?  No.  I barely speak English.  Do I need to learn another language?  If you tell me I need to learn Russian to help me understand, I’m on it.

Ibby:  (I imagine Ibby took a deep, calming breath before continuing)  No.  You do not need to learn Russian.  But you need to feel the words instead of trying to do a word for word translation.

Me:  Feel the words?  Mind began to race, a panicky feeling overtook my body. I don’t know what that means!  What does that mean?

And so Ibby patiently tried to explain that by getting lost in the exact meaning of the words I was missing the emotions being expressed.

With this in mind, I went back to Emma’s bedroom with her.  Very distressed, she continued to repeat the script and then suddenly veered off to an unrelated, yet another, unattainable, desire.  “I want to go to Martha’s Vineyard.  Not binyard, v, v, v, vineyard.  Mommy I want to go to Martha’s Vineyard.  No baby.  We can’t go to Martha’s Vineyard, it’s too cold.  I want to go to Martha’s Vineyard.”

As I sat with her listening, I tried to be present, neither lying to her nor adding to her anxiety, just being present and as I did this I felt a flood of recognition.  I realized I do a version of this too, only I call it “spiraling out”.  It happens at odd times, but being tired makes it harder to cope with.  When I think about how I spiral out an image of a pin ball machine comes to mind.  My thoughts are the little metal ball careening around hitting one side, ricocheting off the little bouncy things that make noise while the lights flicker, before shooting off in another direction.  Nothing anyone says helps me.  In fact, often well-intentioned people will make it much, much worse, because my mind is literally looking for things to think about that will create more anxiety.  The only thing that has ever helped me when I get this way is a calm, loving voice gently nudging me down a different path.  It has to be authentic and very, very loving and very, very calm or I become suspicious and even angry.  With this thought in mind I gently said to Em, “Is it okay if I tell you something?”  She nodded her head.

“I get upset too, Em.  Just like you are right now.  And when I do I have thoughts that I can’t stop going around around in my head.”

She sat up and looked directly into my eyes.  “Sometimes when I feel stressed and tired I can’t make the thoughts go away.  Sometimes the same thoughts just keep repeating in my head and I can’t get rid of them.  Daddy calls it spiraling out.  But you know what?  It’s going to be okay.  I’m going to stay with you.  It’s going to be okay.  I promise.  Try to breathe.  Here breathe with me.”  We inhaled together and then exhaled.  “Feel the cool air on your face and the warmth of the blanket on your body.”  I continued in this way, talking to her softly, trying to guide her, trying to make her aware of the present.  These are the things that help me when I’m agitated and feeling overwhelmed and eventually she rested her head on me, leaning her body into me as I spoke to her in a soft voice.

It was during those early morning hours with the two of us sitting together while everyone around us slept that I felt a surge of understanding.  When I get lost in the words that fill my head and when the words don’t match up with the emotions it feels confusing and I become perseverative and spiral out.  I see this now.  In the past I’ve called it anxiety.  I’ve said I’m overwhelmed and tired.  These are good words to describe what I’m feeling, but a more accurate explanation is that when I become fixated on specific thoughts, in my case they are often in the form of fears, I can become so lost in the specifics I lose sight of the emotions.  This has happened my whole life, only it took my daughter to get me to make the connection.  We are not so different, my daughter and I.

An image that calms me – The Manhattan Skyline taken while walking to my studio the other morning

Manhattan Skyline

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Posted in Autism, mother/daughter, Parenting

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Anxiety, Fear and The Buddha

Posted on September 4, 2012 by | 37 comments

Emma’s new school begins Thursday.  I’m grateful for this because the pulling sensation in my stomach coupled with the constriction in my chest is increasing with each passing day.  As awful as that feels, it’s a familiar feeling, one I know to identify as anxiety and it feels better than the feeling of fear AND anxiety I’m going to feel Thursday morning when Emma looks at me with abject terror and says, “Please Mommy.  I don’t want to go to new school.  We go together.  You and me together.”

When I explain to Emma, as I have every day for the past two weeks, that I will be with her, when I explain that I am going to go into her classroom with her to meet her teachers for the first time, because the school has not returned any of my phone calls or emails since we returned from Colorado, when they explain how busy they’ve been, when they say that the assistant principal did, after all, reach out to me and whose name, phone number and email address I scribbled on a piece of paper because I was in Jerusalem at the time and cannot find that scrap of paper, I will nod my head.

I will hand someone the letter I’ve written about Emma so they can better help her and understand what she needs.  The letter that Emma would not participate in writing with me, but instead wandered off, insisting that she be able to watch the Hubble Imax theatre movie in our bedroom instead.  I will thrust that letter into her teacher’s hands and hope she will get around to reading it.  None of this is happening the way I envisioned it.  None of my plans, while in Colorado have been put into action because the school was closed, not a soul was around by the time we returned to the city.  So I will make some utterance of understanding, just as I did two minutes ago when I finally got through to the Office of Public Transportation who was unaware Emma was attending a new school, which means there will not be a bus for her until this gets straightened out.  It will require a dozen more phone calls to her new school who hasn’t picked up their phone, a dozen more messages like the one I left this morning will be left, and finally I will physically go to the school and find someone to speak to face to face because leaving endless messages on various extensions is an exercise in futility.   I know this.

In between writing this post I will pick up the phone and call several more times, just in case, just on the off-chance an actual human being will pick up and miraculously connect me to someone who knows that Emma is enrolled in their school and will be kind enough and compassionate enough to understand how big a deal this is for her.   Someone who will understand the enormity of this next step in Emma’s life.  Someone who will hear me when I say she is anxious.  Someone who will not judge me for wanting to ease Emma into her new school and will be kind to both Emma and me when we arrive.  Someone who will agree to work with me in these next few days or weeks, or however long it might take before that anxiety, that terror subsides.  Someone who will honor those feelings and not dismiss them.  And in the meantime while I try desperately to find that person who may not exist, I can, at the very least, be that person for my daughter.

I am walking that precarious fine line of honoring her feelings, while not changing the subject or saying anything that might encourage more fear and anxiety.  Identifying my own feelings, helps me in keeping my own overwhelm at bay, so that I might better help Em manage her own.  I try to reassure Emma, but not promise things I cannot know or keep.  This requires finesse, calm, tact, a level head, the knowledge of when to remain quiet and when to speak, this requires things I do not possess, but am trying to learn.

“I don’t want to go to a new school,” Emma said again yesterday.

“It’s scary to go somewhere new,” I answered as she put her head on my shoulder.

Em nodded,  “I don’t like the new school.  I’m scared, Mommy.”

“New things can be scary, Emmy.  But on Thursday I’m going to go with you.  I’m going to meet your new teachers with you.  And then when you are safe, I’m going to go for just a little while and then I’ll come back and we’ll go somewhere together.  Somewhere fun.  Where would you like to go?”

“Mommy will be right back.”

“That’s right.  Where would you like to go after your first day of school?”

I want to go to the big carousel and the zoo,” Emma said.

“Okay.  That’s what we’ll do then,” I promised.  I’ve cleared my calendar for both Thursday and Friday.  I am planning on hanging around the vicinity of her new school, I will be there to pick her up, I will go with her in the morning, I will photograph her bus driver and the bus, her teachers, her classroom, her classmates.  I will go over these photographs with her on the weekend.  It will take what it takes.  I can’t remove her fears, but I can try to ease them.

Over the weekend I took Em shopping for a new dress to wear to school.  We didn’t find one, but we did find some other things for her to wear.  On the way to the store Emma stopped in front of a shop window and said, “Look!  It’s a Buddha.  It’s a wonderful Buddha!”

And in that moment we were both happy.

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