business woman holding up hands, "back up"

Special Needs Mothers Need Not Apply

My neighborhood has a special Women’s Club that meets regularly and hosts family-oriented social events. I’m going to be direct and get right to the point: I have been asked by several women not to attend any of these meetings because I have an Autistic child.

Bear in mind, I have never brought my son to a meeting, he has never been to a social event, he has never caused a neighborhood “ruckus.” He has Autism. It’s not contagious, scary or dangerous. There’s nothing unusual to stare at when you meet him. Why, then, am I blatantly cast out?

I have been a single mom for nine years. My children and I have lived on this block, renting my home, since our return from Knoxville two years ago. I have never brought a date home (what’s dating, ha ha!), had a loud party, had any questionable visitors, or been in trouble with the law. In fact, having disaster response training under my belt and being a volunteer with the Fire Department, I would be an amazing resource for the community if someone would dare get to know me.

I walk my two giant Malamutes at least twice a day and always wave and exchange small talk with everyone I meet. Everyone waves and smiles back, yet we’re still not allowed into “the club” (first rule of Fight Club is…). Worse yet, I continually get asked why I’m not seen at the club meetings, and am also labeled the “crazy homeschooling neighbor that doesn’t participate.”

This just compounds our history of being kicked out of restaurants, book stores, flights (!), and why no one in my family will visit us. I’ve also been told he’s not Autistic, it’s my parenting that’s the problem. That’s a good one!

With all the awareness work and training I do, why are we still experiencing this kind of response from people?

What should I do?

Well, I have some options about my neighborhood. I don’t have the energy to tackle public places at the moment (I will move one mountain at a time!), but here are my choices:

  • I can whine about how unfair it is and feel like a victim
  • I can say, “Oh well,” and let it roll off my back, like water off a duck
  • I can organize a neighborhood gathering of my own, or request to be a special “guest speaker” at the next one

If I can train law enforcement, EMTs, and firefighters about Autism, why can’t I put something unique together to present to my neighbors? It would be so beneficial for everyone to learn a little more about Autism and my son in particular. This way, when we have a wandering situation (which recently happened!), I can feel like my neighbors have my back rather than feeling like they are sitting in judgement. Sure, they may continue to judge me after they learn more, but that’s none of my business.

Now I’d like to hear from you

Have you ever felt persecuted by a group due to your (or your child’s) Autism? How did you respond? Would you like to learn more about giving a small presentation to your neighborhood? Share your comments below, drop me an email, or say something on the SOA Facebook page – I always love sharing thoughts and ideas with you.

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.