autism anxiety

Autism Anxiety: It’s Not What You Think

autism anxietyAs an emergency responder, I’m sure you’ve had “that call” a bunch of times… it comes in as heart attack or chest pain, and you drive lights and sirens to the call location only to find out your patient is simply having an anxiety attack. Sure, you do your job and tell them to take some deep breaths, you assure them they are safe, maybe even call a family member, and get a refusal. All the while in your head, you label it a BS call, or “status dramaticus.”

Of course I am not belittling or dismissing the fact that generalized anxiety disorder is real in any way; it is a recognized disorder and it affects people greatly. What I DO want to talk about it autism-related anxiety, and how it affects those who experience it.

My 18 year-old daughter has anxiety. It is a huge part of how her autism manifests. It’s taken me some time to truly understand the things she struggles with.

To be completely raw and brutally honest, there are days – even now – where it’s hard for me to put myself in her shoes. This month I’ve worked a ton of overtime shifts, operating on two hours of sleep per day if I’m lucky, and still couldn’t pay some of our bills. I’m managing a special needs household on my own and the more I work, the more I watch my “kingdom” spiral out of control as I fall behind on the day-to-day tasks that are important to our survival. So when I look over at my daughter and she’s completely melting down over something I consider a bit trivial, there is a part of me that thinks, “Really? Over this? What if she had REAL responsibilities, like a typical 18 year-old? What if she were amid choosing a college, taking exams, working, experiencing peer pressure, trying alcohol, or was in a relationship? How the hell would she handle THAT if this (minor) thing is completely destroying her right now?”

There is so much more to it than that.  

Of course, I’m human. I worry that I am coddling her or sheltering her too much. I worry that she won’t become a functioning member of society. But then I see her face a lot of her anxiety head on, with the attitude of a warrior, and I watch her make great strides overcoming some of her worst attacks without anyone telling her what to do… and I know she is where she needs to be right now. Especially with the help of my meltdown management breakthrough technique.

So what is autism anxiety? How is it different?

For one, autism anxiety is more physiological than psychological. When anxiety kicks in, it’s not necessarily triggered by stressful thoughts. Sometimes, it’s just there, like a nagging toddler that constantly follows you around and tugs at your apron strings, demanding attention. Aside from the typical rapid heart beat and dry mouth, it can cause an array of GI issues, from nausea and vomiting and diarrhea to digestion issues and acid reflux. It can manifest as joint pain, muscle aches and circulation issues, causing things like Raynaud’s disease. It can make your whole body shake uncontrollably for no logical reason whatsoever. Being in fight or flight mode long-term is very stressful on the body. Being unable to logically control it feels like pure torture.

The other day, my daughter told me it was very “loud and crowded” in her head. Like that scene in Bruce Almighty where Jim Carrey starts to hear everyone’s prayers in his head at the same time, my daughter hears all her thoughts. Only they’re not so nice. They constantly tell her she’s not okay, there are things to worry about, things to be scared of. They bring up every line of every conversation she’s had and tell her how she should have said things differently. They remind her of every embarrassing moment of every childhood event, relentlessly. It’s like a constant soundtrack in her head, and she has to learn to tune it out just to function.

That’s just the thoughts. Then the physical symptoms kick in. The nausea, the muscle cramps, the trembling… for her, it feels like she’s in a tiny glass case and can feel her anxiety climbing up her body and suffocating her. And there’s no escape. It doesn’t matter how logically I approach her fears or thoughts, she cannot control them. She can’t simply “snap out of it.” Her brain does not care if there is a real threat or not; her body reacts as if there is. And it goes downhill from there.

Eventually, if she cannot gain control over it when it’s happening, she will reach the point of complete shutdown, which can include paralysis, difficulty breathing and the loss of ability to speak. She describes this as an overload. There are so many thoughts and physical sensations hitting her simultaneously that it becomes overwhelming. In this state, if I ask her, “What’s wrong?” she feels like all of her thoughts form a huge, heavy mass and it’s just too much. She can’t name or articulate any one thing.

These are just the day-to-day experiences, not even touching on anxiety that stems from social situations and having to interact with others.

Now let’s think about at adding an emergency situation to the mix. In my autism training program for emergency responders, I talk about how it’s more difficult to identify autism in females. Autism anxiety can be a huge clue.

So what should you do on scene when you recognize this type of paralyzing anxiety in a patient with autism? How is it best handled?

Let’s start with what NOT to do:

  • DO NOT become angry or raise your voice
  • DO NOT restrain unless absolutely necessary
  • DO NOT tell someone to simply “snap out of it”
  • DO NOT say, “Use your words” to someone. As the brain escalates, the ability to be rational and articulate diminishes greatly.
  • Avoid moving someone until they calm down, unless they are in immediate danger or the current location/setting is contributing to the escalation.
  • Remove unneeded bystanders – including additional personnel
  • Do NOT turn it into a power struggle

What SHOULD you do?

All efforts should be made to prevent a meltdown if possible. Remember, you are not “giving in” to negative behavior; you are literally throwing a lifeline to someone who is unraveling neurologically

  • DO turn off lights and sirens if possible
  • DO give space to allow the person to self calm if they are able
  • DO allow one familiar family member or caregiver to remain with them
  • DO respond patiently and compassionately
  • DO offer choices
  • DO provide a pen and paper to see if they can write down their needs
  • DO keep the individual safe from harming him or herself

Being an EMT means that I have a responsibility to my community to provide the best patient care I can, including recognizing and helping those with special needs that struggle with a variety of disorders and symptoms. Being an autism parent means that I must continually strive to find a balance between honoring and supporting my children’s struggles and giving them tools to help them be the very best version of themselves and succeed as an adult.

Autism anxiety is a tough thing for me to help my daughter manage… but any time I get overwhelmed with her meltdowns I stop and imagine what it must feel like for her. Seeking education and providing compassion and empathy will take you a long way as an autism parent OR as an emergency responder. Or in my case, both :)

 

J-Bird2

Operation Get Autism Training – Calling All Volunteers

J-Bird2Happy New Year! I’ve got a special announcement for you – something I’ve been working on diligently over the last several weeks. It’s finally ready…

Operation Get Autism Training is here.

As you know, I’m the parent of a very special boy with Autism, and also an Emergency Responder. I have a unique perspective – I’ve relied on Emergency personnel in times where my son has wandered, received injuries, or caused a public disturbance. I’ve also responded to incidents involving these very same situations.

Without understanding what to look for, Emergency Responders may mistake your child’s behavior and symptoms for drug use, mental illness or non-compliance. What could happen? They may get injured, thrown in jail… or worse.

Over the past four years I have developed multiple customized training programs for Disaster Responders (CERT), Police Departments, Fire Departments, Campus/School Security, EMTs, and even department heads at large a tourist/event facility.

I have had the privilege of training these willing and enthusiastic groups myself and I’ve loved every minute of it. I know I am making a difference in people’s lives every time I teach this program.

But it’s no longer enough. I’m getting tired of the senseless shootingsmissing children reports and Amber alerts, and severely escalated incidents involving Autistic children that are part of today’s frightening reality and now I need your help.

I’ve put together a call for volunteers – Autism Warrior Moms and Dads like me – to come together and make a global difference.

Operation Get Autism Training Goals for 2014:

  • Build a Fierce, Dedicated Team of Volunteers
  • Obtain Accreditation for EMS Continuing Education
  • Obtain P.O.S.T. Certification for Law Enforcement Continuing Education
  • Seek Out and Obtain Corporate Sponsorships
  • Press Releases and National Media Reach
  • Research and Apply for Grants and Funding for Training Materials
  • Create a Video Training Series
  • Get as Many Agencies and Responders Trained as Possible

It’s time to reach beyond our home towns. I can’t do this alone. I need a team behind me with me that’s ready to make a difference. Together we can make this happen.  So if you’re passionate about not only helping your own child but the thousands of children that don’t have a voice – join me. Volunteer with Operation Get Autism Training today and let’s get our Emergency Responders trained!

Click through to this page to sign upWe will have regular conference calls, a private Facebook group to collaborate, share and inspire, and I know we can bring our individual strengths to the table to create a movement together!

Why Emergency Responder Education Part II – Behaviors

Yesterday I participated in a beautiful 9/11 memorial service and emergency preparedness festival. I am still brought to tears when the events of that horrific day are described by anyone, especially those who serve in public safety. I am honored to be a part of a huge calling to encourage citizens to get involved and help their families, neighbors, and community be prepared for disasters of all kinds. To learn more about how you can be involved in your community, go to the Citizen Corps website.

Common behaviors of children with Autism and how to handle them

As promised, here is part two of why I am passionate about training and educating Emergency Responders about Autism. Here is a snapshot of behaviors that are highly likely to be misinterpreted by police officers, EMTs, or firefighters responding to an emergency call:

Self-stimulatory (stimming)

  • Hand flapping
  • Finger play
  • Head tapping
  • Spinning
  • Transfixing on spinning or moving objects

Unless the child is injuring himself or others, self-stimulatory behaviors should not be stopped. This is a comfort for the child.

Self-injurious

  • Head banging
  • Biting self
  • Scratching
  • Eye gouging

This behavior should be stopped immediately.

Aggressive behavior is not intentional - handle with care

  • Head butting
  • Biting
  • Punching
  • Crashing into or pushing others

Aggressive behavior is usually caused by over-stimulation, sensory-seeking, fear, pain, surprise, or lack of communication.  Remember this child does not mean to hurt you. Restrain if needed, as calmly and controlled as possible.

Insensitivity to pain

  • May be unaware of pain
  • May under-react: major physical trauma may go unnoticed
  • May over-react: minor scrapes and cuts could be perceived as major

Check thoroughly for injuries; do not rely on communication or reaction from the child.

Aversion to touch

  • Light touches (hand on shoulder, back rubbing) may be painful

Although they may crave deep compression and tight squeezes, light touch is often over-magnified and can cause pain and discomfort. Do not approach the child from behind if possible; children with Autism do not like surprises.

Avoiding eye contact

  • May look at you through peripheral glance
  • May look at you through an object or spread fingers

Do not mistake lack of eye contact for suspicion of guilt, avoidance, lack of respect, or belligerence.  Try to get eye contact if you can, but do not force it.

Lack of response

  • May only respond to visual cues

Emergency responders should consider carrying sets of visual communication cards, or familiarizing themselves with basic sign language.

Repetitive motion

  • May repeatedly fidget with an item
  • May fixate on spinning or lighted objects
  • May appear to be in a trance

Do not mistake for drug use, mental illness, or lack of respect for authority.

Extreme hyperactivity or inactivity

  • Prone to running or bolting away suddenly

    Children with Autism are prone to running away - especially if frightened or confused

  • May rapidly pace back and forth
  • May appear out of control (like the Tasmanian Devil!)
  • May go limp at touch or fold into self

Redirection is the best way to diffuse hyperactivity or passivity. Try asking what the child’s favorite show, game, or movie is.  Asking mathematical questions or giving the child a “job” to will reel in their focus.

Inappropriate emotional response

  • May laugh or cry for no reason
  • May laugh at a very serious situation, or in response to feeling or causing pain
  • May show extreme distress over minor incidents

This is very hard for us to understand. Laughter in response to a serious question or accusation does not imply guilt or disrespect. It is simply a defense mechanism for the child.

Echoing speech or movement

  • May repeat everything you say
  • May mimic your tone and gestures
  • May speak in robotic tone

Do not mistake this for “being a wise guy”, or lack of respect.

Non-verbal and non-responsive to verbal cues

  • Limited or no speech
  • May appear deaf
  • May communicate with sign language, by pointing, or using picture cards

Do not mistake for lack of interest or ignorance. Try to use common gestures to get through to the child. Be patient!

Attachment

  • May hold unusual items
  • May be extremely agitated or distressed if item cannot be located

While seeming unimportant or silly to us, comfort items are critically important to children with Autism. It may be a rock, a paper clip, fabric, shoelace, or anything. Do not take away the item from the child. Try to find the item if the child loses it.

Need for routine and order

  • Obsessed about routines
  • Literal about things like time and location (“It’s not 8:30, it’s 8:28!”)
  • May repeatedly seek places or activities from the child’s normal routine

Children with Autism look to bring order to a world that’s out of order to them. Noise, lights, smells, and other sensory challenges are coming at them all the time. This is their norm.

Oblivious to others’ emotions

  • Typically do not understand facial expressions
  • Will not understand sarcasm, idioms, exaggerations, or jokes
  • May not understand they are a victim of a crime
  • May be hard to diffuse situation with normal socialization techniques (e.g., “How would YOU feel if…”)

Don’t assume that these children “should know better”, or that a simple unapproving look will get through to them. They rarely know what they did wrong and need it explained in a way they understand.

Children may respond to loud or confusing noises by screaming to drown it out

Inappropriate response to noise

  • Hyper sensitive: May cover ears with hands or try to break object that is causing discomfort
  • Hypo sensitive: May appear deaf or not respond to verbal commands

Each child on the Spectrum presents different variations of sensory issues – no two are alike! They can even be hyper and hypo sensitive to the same thing!

No fear of danger

  • May run into traffic
  • May bolt suddenly into the street or a hazardous environment
  • May willingly go with strangers
  • Will not recognize dangerous situations
  • May not understand fire, heat, sharp objects, or other hazardous items

While often possessing extraordinary academic abilities, many children with Autism do not recognize danger, exhibit no fear, are prone to wandering, and miss basic cause and effect concepts (“If I touch this, I will get burned”). Never leave unsupervised at the scene of an accident, fire, disaster, or crime.