Thursday, March 28, 2013

The Autism Question: Am I Safe?

We hear so much about how socialization is key for autistic children and people.  We are told that their main deficit is relating to people and that the solutions are school, social skills training, and behavioral programs.  Throughout the history of autism, we have looked at autism from the outside.  We've limited our view and responses to the external actions that we believe to be the "problem."  

Let me tell you something about myself.  I startle easily.  I always have.  As a child, I was shy, but not because I didn't like people.  It was because I was easily startled by everything and it made me anxious.  Just yesterday, I was sitting at my computer and clicked on a link I thought sounded interesting.  I scrolled down the page and started reading about a subject that immediately captured my attention.  I was fully engrossed in the text.  And suddenly a woman's voice began talking.  I jumped in my seat nearly fell out of the chair.  Turns out, the text I was reading was a transcript from a video and the video started playing automatically.

This startle reaction that I have allows me to identify with my son so much.  He is the same way.  All the autistic people I've talked with tell the same story: anxiety is an enormous problem.  So why are we talking about behaviors?

When babies are young they need some essential basics to be met: eating, sleeping, and care.  That care includes attention, giggles, falling in love with each other, and learning.  Before we can even get to that part, the very foundation supporting it all is a feeling of being safe.  To feel safe, babies and people need to know what to expect.  Babies need to know that if they cry, Mommy or Daddy will pick them up and comfort them, that if they are hungry, Mommy or Daddy will feed them.

Children need to know who makes them feel safe.  They need to know this with a certainty of experiences over years and years.  Children need to be able to absolutely relax and feel safe with certain people and to know who those people are that they can relax with.  If they don't get that feeling of safety, they are constantly defending themselves from a startling world.  They must use extra energy to defend themselves.  They are constantly under assault from an environment and people they cannot predict.  

Because autistic children and people feel so much anxiety, we need to provide even more assurances of safety, not less.  We need to reduce their stress, provide even more comfort and relaxation, not less.  We don't need them to feel "maybe I'm safe," or "sometimes I'm safe," or "some places I'm safe."  We need to help them feel unequivocally "YES!  I AM safe.  This person will keep me absolutely SAFE."   They are constantly asking without asking, "Are you there for me?  Will you put me first or other people's ideas first?  Will you keep me safe?"

These questions are not a reflection of how you've parented or how you've acted in your relationship with the autistic person.  These questions come from being autistic.  They come from an anxious brain and body that are constantly assaulted by environment, sensory input, and emotions.  The questions are not the problem, but our responses mean everything.

This need for a feeling of security is why school is so hard on autistic children.  Our children need much more foundation of safety than others do.   It's why putting further demands on them from the outside - like school, social skills training, like behavioral programs - actually exacerbate anxiety, as well as add a layer of shame.

Let's start to look at autism from the inside.  Let's provide extra layers of reassurance and comfort.  When we provide that foundation of a place and a person that they can always be themselves with, someone and somewhere they can move how they need to, to talk how they need to, to let out strong feelings, then autistic children and people will have the support they need.  Then they'll be able to say not just "maybe I'm safe" or "sometimes I'm safe," but "YES! I am safe."  

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10 comments:

  1. Awesome Sauce!

    Not feeling safe is a HUGE problem. And no one ever talks about it. Thank you for articulating this so well.

    I recently was diagnosed with Asperger's, though I've 'known' for years (I'm 40). The emotional release (then exhaustion/fatigue) that followed was overwhelming and the effects have lasted weeks. My partners kept me 'safe' during the initial out-poaring/ nightmares/ meltdowns. It was incredible. I am thankful for their understanding.

    NTs don't understand that daily we are dealing with such uncertainty, such insecurity, that it is a miracle, and a testament to our strength and resilience, that Auties/Aspies aren't insane with the stress.

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  2. Safe is a lie.

    Being Autistic for 30 years has taught me this.

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  3. Thank you, Brenda.

    I will make sure my daughter knows she is safe and valued. Being autistic has taught me hope and perseverance. I will endeavor to give those to my child.

    Jane

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  4. Yeah, safe is kind of a pipe dream. But I tell you. Being with Brenda comes incredibly close.

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  5. Thank you for this post.

    :) tagAught

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  6. Thank you, Brenda for your poignant, thoughtful post. You are
    helping me to help my son.
    Elizabeth Jackson
    @ElizJacksonSays

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  7. BBoucher,OT,PhD,PTApril 2, 2013 at 7:29 AM

    (Quick short responses because I don't have much time. Try not to interpret authoritative tone.)
    "This need for a feeling of security is why school is so hard on autistic children." And why school programming that is anything less than individualized is less than helpful, near impossible to achieve. Neurodivergent K says it.

    "Our children need much more foundation of safety than others do." This responsibility remains with parents, and not all parents are similar or equal in their skill or ability to parent. Unless our society decides that children are the responsibility of the society (a cultural attitude closer to that in Germany, I understand). Instead, our society convinces itself to give our children to the state-run education system.

    "It's why putting further demands on them from the outside - like school, social skills training, like behavioral programs - actually exacerbate anxiety, as well as add a layer of shame." School appears to 'even out' the adult influence in each child's life.

    Be well, Brenda. Good work!

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  8. When I was young, nobody would even even say the words "social skills" or "behavioural training". The prevailing thought was that if you felt right, you would act right. Let's keep both!

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