autism boys club

Autism is Not a Boys’ Club

autism boys club

In Georgia, the statistics are cited as 1 in 39 boys and 1 in 181 girls have been diagnosed with autism. It is said boys are five times more likely to be autistic than girls. These numbers are in my Autism Training for Emergency Responders class.

After my daughter received an autism diagnosis at age 17, I started digging deeper and realizing that it’s not necessarily the case that less females are autistic, but that many are flying under the radar altogether.

Autistic girls are often regarded as “eccentric” or “quirky,” may be misdiagnosed, or only partially diagnosed. There are so many stories of women finally received an autism or Asperger’s diagnosis in their 30s and 40s, and how relieved they are to find they’re not “defective” after all.

It Hit Home for Us

For my daughter, it truly put the last piece of the puzzle together for us. Things she struggled with unexplainably, such as anxieties and fears, strange rituals, and extreme resistance to change, now made sense. My daughter writes,

“My diagnosis was like a lifeline. It made me feel not alone, and it made me see that I wasn’t broken. For a lot of my life I felt like an alien, I felt like I didn’t really belong anywhere. Knowing I am autistic helped me stop beating myself up over everyday behaviors and I began to accept myself – quirks and all.”

Much of the early research into autism was based on data from boys. When Hans Asperger first defined autistic psychopathy in 1944, it referred only to boys; he believed no women or girls were affected by the condition. Even the current DSM questionnaires are geared toward standard autistic behaviors in boys.

Girls are more likely to engage in “social camouflage” behaviors – like hanging out in groups, mimicking facial expressions, or showing signs of empathy – that mask many of the classic “male” signs of autism. Repetitive or obsessive acts, like collecting things or having intense interests, are seen more as unique quirks than as anti-social behaviors. They may even be quickly labeled as OCD or Anxiety, rather than seeing autism as a root cause.

Clinically Speaking…

Does it make sense that autism presents so differently in females? Think about it. Gender roles aside, the diagnostic criteria for autism is problematic. According to Scientific American, it’s based solely on data acquired from studies of boys.

Those in the medical field recognize that a heart attack presents very differently in women. Women can experience a heart attack without any chest pain or pressure; instead they may experience:

  • Shortness of breath
  • Pressure or pain in the lower chest or upper abdomen
  • Dizziness, lightheadedness or fainting
  • Upper back pressure
  • Extreme fatigue

Why is it so questionable to have something as significant as autism spectrum disorder also present differently?

Resource Gaps Galore

The absence of resources for my adult daughter with autism is due to a trifecta of issues:

  1. Despite autism being a neurological condition, it is still viewed as a mental health issue by many professionals
  2. Females are often misdiagnosed or overlooked altogether
  3. Once a child is no longer in school the resources dry up, creating an unacceptable gap in services for autistic adults

Reducing the gender gap in diagnoses is a start; it is critically important to make sure that females have the same access to resources and care that their male counterparts do.

autism temperature regulation

Autism Tips for Emergency Responders: Temperature Regulation

autism temperature regulationGetting my son to wear a coat in the winter takes an act of Congress, regardless of the frigid outside temperatures. I used to think he was lazy, or perhaps that the material of the coat bothered him (he has a multitude of sensory processing issues and I often have to make sure his shirts are tagless and socks are seamless). Yet, here we are in the midst of an Atlanta summer and for some reason he prefers turtlenecks and heavy sweatpants, despite the array of shorts and t-shirts he owns. What’s going on?

In addition to sensory overwhelm and sensitivity to sounds, lights, smells, and textures, many people on the autism spectrum also have difficulty with temperature regulation.

How does temperature regulation work?

Aspie writer Jeannie Davide-Rivera describes it perfectly as:

…an automated body system that regulates the body’s core temperature in response to outside stimuli. The temperature of the body is regulated by neural feedback mechanisms in the brain, which operate primarily through the hypothalamus. It has the remarkable capacity for regulating the body’s core temperature that keeps your body temperature somewhere between 98F and 100F. When your body is exposed to heat or cold conditions this system balances your internal temperature with the temperature outside.

Why is this an issue for emergency responders?

When you interact with an autistic person that may be hyper- or hypo-sensitive to heat or cold, it creates several issues. First off, recognizing temperature regulation issues in a patient can be tricky. Picture someone peeling off their clothing in the dead of winter, in the face of freezing weather (yes, it DOES get cold in the south!).

What about someone on the playground wearing several layers of clothing when it’s 96 degrees outside? It looks rather suspicious. What’s the first thing you would think as an emergency responder? Drugs? Mental illness?

Not necessarily.

Children AND adults with autism may not feel or experience temperatures the same way we do. They’re acting out what feels natural to them because of temperature regulation issues. Additionally, medical conditions and medications can interfere with the body’s ability to cool itself or to maintain a fluid/electrolyte balance. Couple this with impaired communication and decreased body awareness, and you may witness someone going downhill quickly with no obvious cause.

As we are dealing with these ‘Hotlanta’ wet blanket days right now, hyperthermia is a huge risk. It’s important to recognize the signs of heat exhaustion and heat stroke as rapidly as possible and start treatment right away, regardless of how a patient is dressed or how “disconnected” from our logical, neurotypical world they may seem.

Symptoms to look out for:

  • NOT SWEATING
  • Red, hot, dry skin
  • An extremely high body temperature (above 103°F)
  • Loss of consciousness
  • Rapid and unusually strong pulse
  • Shallow, noisy breathing
  • Dizziness or confusion
  • Nausea, with or without vomiting

Be aware of comorbid medical conditions when treating an autistic patient. There are many conditions that present with autism spectrum disorders such as epilepsy/seizure disorders, anxiety, bipolar disorder, bowel disease, immune disorders, OCD, Tourette syndrome, sleep disorders and more.

autism sexual abuse

Beyond Bullying: Autism and Sexual Abuse

autism sexual abuseI’m a petite single female working in public safety. I’m strong; I lift heavy weights six days a week, I run every other day, I do MMA workouts on the days I don’t run, and I take boxing classes on Tuesdays and Wednesdays. I own firearms and I’m trained to properly handle them. I have an advanced alarm system, security cameras, and two giant huskies that share my residence. I’m situationally aware of my surroundings at all times.

And yet…

I receive a daily assortment of inappropriate advances from what I affectionately term as “creepers.”

I’ve also been a victim of sexual assault four times in my adult life.

You know what? It sucks. Big time. It’s not without its permanent price. So if this can happen to a strong and socially aware neurotypical female, where does that leave my beautiful 19 year-old Aspie daughter? How is she to navigate the Land of Creepers? How is she to protect herself?

Communication alone is a challenge. While I can read into seemingly “innocent” texts from my band of creepers and see there is intent (and they think I don’t! Ha!), my daughter is not so adept at underlying messages, innuendos and body language. It’s not just about someone snatching her on the streets; the reality is that she is likely to innocently get herself entangled in a bad situation by simply not picking up on social cues.

Why are they at risk?

A study done of 55,000 children showed a child with any type of intellectual disability was four times more likely to be sexually abused than a child without disabilities (Sullivan & Knutson, 2000). While no specific numbers exist for individuals with autism, research suggests that this population is extremely vulnerable.

Those on the spectrum are generally taught compliance from a very young age, making them easy targets for criminals. Combine that with difficulty picking up social cues and understanding other individuals’ intentions, and the end result is vulnerability to a range of crimes.

Hard to spot

According to Special Ed Abuse, nearly one in six autistic children have been sexually abused.

Recognizing it can be extremely challenging, as communication deficits mean that a child’s report could be unreliable. Typical signs of sexual abuse in children MAY be an autistic child’s baseline behavior. These signs include:

  • Sleep disturbances
  • Angry outbursts
  • Anxiety
  • Depression
  • Difficulty thinking or concentrating
  • Withdrawn behavior
  • Propensity to run away

Since self-reporting of abuse or trauma by individuals with ASD may not occur, it is important that family members, caregivers, behavior support specialists, and other professionals in the child’s life receive training on potential behavioral changes that may be associated with trauma exposure so they may assist in reporting and obtaining services.

Signs of abuse that are unique to autism may include exacerbation of social anxiety, remembering or re-enactment, changes in the child’s baseline behavior, and new onset or increased self-injurious behaviors.

Also keep in mind that when encountering professionals within the criminal justice system, persons with ASD may not respond to verbal instructions, they may avoid eye contact, appear argumentative, become agitated and anxious, appear to be under the influence of narcotics, or only repeat what is being said to them. These behaviors should not be interpreted as deliberate, disrespectful or hostile.

They may also be fixated on a particular object or topic and may ask repeated questions, speak in a monotone voice with unusual pronunciations, and be honest to the point of rudeness. They may not understand the extent of the trauma they experienced, nor the expectations of assisting within the criminal justice system.

Most police departments have a Crisis Intervention Team, which staffs a psych nurse and an officer trained in psychiatric crisis management. They have many tools available to them that other officers may not. If you suspect autism, seek assistance from department assets such as a mobile crisis team or unit early on in the legal intervention, as they can help identify if the person may require special assistance from psychiatric professionals.

For more information about getting your department trained and certified in autism safety, click HERE.

Nonverbal Autism

7 Tips for Communicating with a Nonverbal Autistic Patient

Nonverbal Autism

Just because a person can’t speak doesn’t mean they have nothing to say.

Communication is a basic human need. In fact, it falls fairly predominantly in the middle of Maslow’s Hierarchy of Needs, under “Social Belonging.” The ability to communicate makes it possible to exchange opinions, thoughts and meanings, enabling us to express ourselves and show our own points of view.

Autistic people with little to no speech have the same communication needs as the rest of us! As I teach in my autism training for emergency responders course, there is a huge misconception that being a nonverbal autistic is synonymous with “low functioning” autism, or even having a low IQ. In my experience, this couldn’t be further from the truth.

Nonverbal people often have extremely vibrant imaginations, intense emotions, passionate interests and a brilliant intellect. They just have to work a little harder and more creatively to convey these things in a neurotypical society that relies on spoken words and often-misread body language.

Communication on scene

When you arrive on a scene as an emergency responder, communication with your patient is vital. Where I work, I frequently face language barriers, making it challenging to obtain key information in order to treat the patient with the right protocols and do no further harm. The situation is magnified because the patients and their family members typically don’t understand what I am asking them, nor can they communicate what they are feeling and experiencing, and what medical interventions they need from me.

That’s one advantage (and another debunked myth!) of communicating with a nonverbal person on scene – nonverbal DOES NOT EQUAL non-hearing. This is a huge plus when your patient understands what you are asking.

Knowing this, here are some tips to communicate with a nonverbal autistic on scene:

  1. Use the caregiver. Find out from the caregiver if you can: what is their primary means of communication – what kinds of body language are they familiar with? Do they clap for yes? Do they use sign language? Gestures? Most times, family members are a WEALTH of knowledge on scene when it comes to autism.
  2. Seeing eye to eye. People with autism may not give you direct eye contact, but simply sitting or kneeling so you are at the same level as your patient speaks VOLUMES in gaining rapport. Sometimes that’s all it takes to help alleviate the fear of an emergency situation, therefore helping to get the person out of defense mode and more able to communicate with you in their own way.
  3. Narrate. It may sound silly, but even if you can’t communicate with your patient and get no response whatsoever, remember THEY CAN HEAR YOU. Unless it’s a critical patient, I will always announce exactly what I’m about to do to a patient, and continue to ask questions as I’m doing it, looking for any sign of understanding in their face or body language.
  4. Offer choices. Asking a nonverbal patient, “Do you want X (and point to or hold up what you are referring to) or Y? (point to or hold up the alternative choice)” can open lines of communication and help them feel more in control of the situation. Remember, the less they feel in control of what’s happening around them, the more a complete shutdown of the nervous system is imminent.
  5. Pen and paper. Simple, simple, simple… always keep a notebook and pen in your pocket! Sometimes even adults with autism that are verbal lose their ability to communicate under distress. The opportunity to write down their needs can make the scene run safely and smoothly.
  6. The Sign Expressions Language Mini Chart for Emergencies. This mini chart includes photos, words, and phrases to help facilitate communication during an emergency, including HELP, INTERPRETER, ALLERGIES, the Alphabet (Spanish and English) and Numbers. Our trilingual sign language mini chart is pocket sized (4″ by 6″) and include many important words to use during an emergency situation by First Responders, Health Care Professionals, and many others.
  7. Phone it in. Okay, not literally, but… our smartphones have become almost necessary on scene these days. They help us with language interpretation, drug calculations, pregnancy due dates, and of course, patient reports en route to the hospital. It may be helpful to also have an app for nonverbal autistics on your phone. Here is a list of apps available through iTunes, as well as Google Play.

Over to you…

Have you encountered a nonverbal autistic child or adult on scene? What worked for you? Share by commenting below!

autism self injurious behavior

5 Possible Causes of Autism Self-Injurious Behavior

autism self injurious behavior

Both of my teens experience significant gastrointestinal issues as part of their autism. I was out running errands with my daughter (who just turned 19! How did this happen?!) and she had severe cramping from abnormal cycles and anxiety. We had no access to pain relief meds; then I looked over and saw her punching and pushing on her stomach. She said it actually felt better… and admitted this wasn’t the first time she’s hit herself for pain relief.

She said, “I wonder if this is why some people with autism hurt themselves, to actually relieve the pain.” She told me that the combination of the pressure and the feeling of doing something about her pain made her feel better.

I started to wonder exactly why self-injurious behaviors occur. On scene it presents like a behavioral issue that must be dealt with swiftly. But there is definitely more to it, and understanding it can help us help our patients more effectively.

What is self-injurious behavior?

In the mental health industry, the definition of self-injury (also termed self-mutilation or self-abuse) is defined as the deliberate, repetitive, impulsive, non-lethal harming of oneself. It often includes cutting and scratching. There is typically a deep-rooted psychological history that accompanies this type of self-injury.

With autism, it can look a little different. The most common forms of these behaviors include: head banging, hand biting, hair pulling, and excessive scratching. According to the Autism Research Institute, there are many possible reasons why a person may engage in self-injurious behavior, ranging from biochemical to their social environment.

These are the top 5 tangible reasons that will help you in the field.

Chemical “messengers”

There is a suggested relationship between the levels of neurotransmitters and self-injurious behavior, in that self-injury may increase the production and release of endorphins in the brain. As a result, a person experiences an anesthesia-like effect, allowing them to no longer feel pain while engaging in the behavior (like my daughter punching her stomach). The release of endorphins also may provide the individual with a euphoric-like feeling.

Seizures

Approximately 1/3 of people with autism have an accompanying seizure disorder. Self-injurious behavior has also been associated with seizure activity in the frontal and temporal lobes, exhibiting behaviors such as head banging, slapping the ears, hand biting, and scratching the face or arms. It is critical to realize seizure-related self-injurious behavior is involuntary and may require restraint. Seizures may typically begin when an autistic child reaches puberty.

Pain

Another reason for this behavior, once again as in my daughter’s case, is simply to reduce pain. There is growing evidence that pain associated with gastrointestinal problems and inner ear infections may be associated with self-injury. The behavior may dampen the pain, but also may “gate” it to another area of the body, serving as a distraction.

Sensory Issues

Self-injury can be a defense against an overwhelming sensory environment. Just being in a public place can be physically painful for someone with sensory processing issues, as their senses are often magnified and they struggle with the filtering of background noise. They may hear everything – times 10 – in their face at all times. And that’s just ONE of the senses – add to that sensitivity to lights, smells and more.

Excessive scratching or biting may be an extreme form of stimming, which helps “reset” the nervous system. An under-active nervous system SEEKS input, so some self-injurious behavior is an attempt to placate their body’s need for sensory stimulation.

Frustration

This behavior can also be a result of sheer frustration. An autistic person that struggles with communication skills becomes frustrated because of their lack of understanding of what was said (poor receptive communication) or because the parent or caretaker does not understand a need they have attempted to communicate. Imagine repeatedly not being able to effectively express your needs to the people responsible for meeting them.

In Summary

As I share in my autism training for emergency responders, self-injurious behavior is most typically rooted in pain. As a parent, instead of stopping the behavior, you can sometimes provide safety and cushioning. In the field, we rarely have that option. Safety is an issue and the behavior must be controlled.

Being aware of multiple reasons for a behavior (as opposed to perceived non-compliance) allows us to look for a physical or medical cause and address that first and foremost, which contributes to the safety of everyone involved.

Over to you…

Have you encountered self-injurious behavior on a call? How was it handled? Share by commenting below!

autism wandering

Emergency Responders: 7 Things You NEED to Know About Autism Wandering

autism wandering

As an autism mom, worry and fear can be my constant companions. My entire life can change in the blink of an eye, especially because my child wanders.

My son has been wandering since he could walk.

One particular time, he was playing with the hose in the front yard. Wearing no shirt or shoes, he didn’t have a care in the world. He loves water. Seconds earlier, I had checked on him through the kitchen window and he was fine. Then his sister went outside and they got into a small scuffle… she told him to “get lost.”

People with autism are very literal. That’s exactly what he did.

In less than two minutes he was GONE.

I activated 911 and had the whole neighborhood searching for him. 3-1/2 hours later he was found several blocks away under a bush. I shook him and hugged him and asked what on earth he was thinking! He only replied, “My sister said get lost.”

My son, now 14, is nine inches taller than me, has a mustache and wears men’s large sized clothing. While he wanders more “online” these days than out of the house, it is still challenging to keep him safe, especially if we go to public events and gatherings.

I have multiple stories of “close calls” like this. As an emergency responder, I’ve been tasked to find missing children at festivals and responded to autism-related EMS calls. If you’re a first responder, here are 7 things you need to know about wandering.

  1. It can happen in an instant. Just like my story, thousands of autism parents have literally “blinked” and had their child disappear on them. It is beyond terrifying. Know that children with autism are not being manipulative, calculating, or trying to get out of a test at school… something catches their eye, or they are experiencing sensory overwhelm, and they run.
  2. It’s more common than you think. The National Autism Association cites that 49% of autistic people are prone to wandering away from a safe environment, which is nearly four times higher than their neurotypical siblings. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers. 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering. 40% of parents have suffered sleep disruption due to fear of elopement.
  3. They are drawn to water. In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. In my Autism Training courses I teach parents and emergency responders to search water first if a person with autism goes missing. This includes rivers, pools, lakes, ponds, and even fountains. For more information on WHY they are drawn to water, read this article.
  4. They may not seek help. Don’t assume wandering is a crisis or emergency to someone with autism. They may be perfectly happy in their own little world and not seek assistance just because they are “lost.” I’ve seen cases where an autistic child was hungry, walked into a strange family’s house and sat down at the dinner table! If you ARE searching for a missing person with autism, don’t discount looking in tight spaces or odd locations simply because a reasonable person wouldn’t go there. I’ve witnessed children found between mattresses behind a dumpster and inside a hay bale.
  5. They may be nonverbal. Even if a child (or adult!) is typically verbal, under the duress of an emergency they may not be able to communicate their needs. In fact, over one-third of autistic people that wander cannot communicate their name or address. Look for alternate IDs, such as bracelets, shoelace tags, phone apps, or QR codes to help you identify someone and get their medical history and caregiver contact information stat.
  6. If there’s a reason, it probably seems trivial to you. The other night, at approximately 4 am during my shift, my ambulance was parked at a convenience store. My partner and I were standing outside, enjoying the fact that we finally got to stop for a long-awaited cup of coffee, when a 15 year-old boy walked up to us. He asked if we could call his mom and apologize for him for not doing the dishes. He said, “Please tell her I’m sorry and I want to come home.” I saw him tapping his index fingers together repeatedly (“stimming“), recognized some of his other behaviors, and immediately identified him as autistic. After some careful questions, we discovered that he failed to do the dishes 12 hours ago and was so upset that he left home. He had been wandering the streets of Atlanta and riding local trains on and off since 4 pm that afternoon. Luckily, we were able to contact his parents and they immediately came to pick him up. They both cried tears of joy that he was found safely.
  7. Parents may be afraid to call 911. The parents from the situation above had been driving around all night looking for their son. They told us that they were, “…about to call 911” when they got our phone call. As a responder, you are probably thinking, “WHY DID YOU WAIT SO LONG!” But as a parent it is scary. You want to believe they are right around the corner. You want to believe they’re hiding in the house somewhere, playing a terrible joke on you. You want to believe you can handle it yourself before getting public safety involved. There is a stigma around “losing” a child. Law enforcement doesn’t yet understand all the nuances and variables of autism. I’m not saying parents are RIGHT to think and feel this way, I’m just saying these are thoughts that go through our mind. It does not necessarily indicate abuse or neglect, so please, as a responder, consider the big picture and dig a little deeper if you are involved in a situation involving a wanderer.

For more information on autism training for emergency responders, wandering, or safety tips, contact Debi@SpiritOfAutism.org.

far from heaven

I’m an Autistic Adult… and I’m in Purgatory

far from heavenI’m 18. I graduated high school last July. I’m “high functioning” enough to be able to take care of my brother and myself when my mom is on night shift on the ambulance. I can dress myself (although not according to society’s “fashion” standards), I keep up with hygiene, sleep and wake on a self-imposed schedule, participate in online communities, cook for myself, help out around the house, and manage my own bank account. No, I haven’t learned how to drive yet. No, I haven’t applied for college. No, I don’t yet have a job but I’m looking for one. It really has to be something quiet and not too overwhelming, though, because there are currently no resources or tools for me to learn how to manage all the challenges I now face in the adult world.

Autism awareness and diagnoses have risen dramatically… for young children. In elementary school my brother had access to all sorts of special accommodations and therapies. Unfortunately, being a girl, I actually didn’t receive a diagnosis until I was 17, because autism presents very differently in girls.

From infancy throughout the schooling years, interventions are readily available. But what happens when you turn 18? Where are the resources? Who teaches us how to interview for jobs? Buy a car without getting ripped off? Balance a checkbook? Pick the right auto insurance? Do taxes? Grocery shop and plan meals? Go on a date? Figure out the best cell phone plan? Find friends?

Society seems to think one magically “grows out of autism” once they reach adulthood, especially if you’re considered “high functioning.” My symptoms are seen as “not really severe” so I don’t qualify for any kind of adult support…

… yet I’m not entirely sure how qualified and ready I am to “adult” right now. Of course my mom works with me on some of these things, I don’t want to make it sound like she’s not parenting me and teaching me about life. But being a young adult with autism, trying to figure out the next steps to life presents with far more struggles than simple social skills deficits.

What is “High Functioning Autism?”

According to LoveToKnow.com, the term high functioning autism, or HFA, is used to describe individuals who meet the criteria for a diagnosis of autism, yet show no cognitive delays, and are able to speak, read, and write, as well as have IQ scores of average or above. Those with HFA do suffer difficulties in communication, language, and social interaction typical of autism, as well as repetitive behaviors and narrow interests associated with the disorder. Abstract language concepts, such as irony and humor may well be beyond the comprehension of adults with high functioning autism.

While with the right support we can manage independent and successful careers, marriages, and social lives, it can still be difficult to blend into the mainstream world. Crowds, even small ones, can activate sensory overload for me and make me shut down. Fluorescent lights, smells, or certain combinations of sounds make my nervous system crawl with pain and discomfort. I have extreme anxiety dealing with the public.

Social awkwardness and communication issues can make me highly misunderstood and even considered rude. Inability to maintain eye contact during conversation can cost a job interview or friendship, as it is often misinterpreted as dishonest or lacking interest. Maybe I pass an interview and secure a decent job, but the challenges don’t stop there. Workplace camaraderie is terra incognita for many high functioning autistic adults. Small talk and sarcastic humor go over my head, and I’ve been known to not have a filter when it comes to appropriate thoughts to verbalize in conversation. Don’t even get me started on not understanding body language or non-verbal cues and facial expressions.

I’ve been accused of being odd, serious, quiet and aloof, when really I’m severely over-analyzing a simple response to “How are you?”

Being high functioning, I often feel that even the autism community discounts my struggles, as my deficits are compared to the hardships faced by the profoundly disabled. So I feel isolated from mainstream society, yet have trouble finding resources for my issues. Less severe symptoms mean I am denied applications for medical and psychological assistance.

I applaud all the awareness and resources put forth in general when it comes to autism, but there is a long road ahead of us still.

***

For tips on recognizing adults with autism on the scene of a crime, fire, medical call or disaster, check out this article, Trix Are for Kids, Autism is Not (Only)!

autism and violence

Autism Tips for Emergency Responders: Autism and Violence

autism and violenceI often get asked during my autism trainings for first responders whether or not it is more likely to see someone with autism using drugs and alcohol, specifically when I describe sensory issues and what it’s like to experience them. This often leads to a discussion on autism and violence.

Are autistic people more prone to violence?

When you look at two highly publicized incidents – the 2007 Virginia Tech campus shooting and the 2012 Newtown, Connecticut, school massacre – there is a perception by the public that persons with autism are predisposed to violent behavior. Yet, neither the DSM5 definition of autism nor follow-up studies have ever illustrated an increased prevalence of violent crime among persons with ASD.

So how do you explain violence and offending behavior? Let’s look at separating actual violent crime from aggressive behavior. In autistic individuals, a desire to communicate and/or the inability to recognize personal space might lead to inappropriate touching or pushing. This is never intentional or malevolent behavior, whereas violent crime is typically deliberate, serious, and planned. It involves force or threat of force.

So when looking at a behavior, here are some ways to distinguish a violent criminal behavior from an aggressive autistic behavior.

Autistic Behavior 1: Making no attempt to conceal or justify the behavior.

When someone believes they’ve done nothing wrong, or doesn’t understand why something is not appropriate, they will not try to hide their behavior. In my experience, most people I have worked with on the autism spectrum are 100% honest and incapable of hiding any type of behavior or reason behind it (this makes it very easy to figure out “whodunit” in my household when something is broken or missing!).

Autistic Behavior 2: The behavior is related to the person’s obsession or special interest.

Rigid, restricted and repetitive interests begin in early childhood but do change over time. They also correlate with intelligence level: the higher the level of intelligence, the more sophisticated the level of fixation. These obsessions can “graduate” from Pokémon characters to computers, technology, and scientific experiments, including arson!

Autistic Behavior 3: The behavior is from misreading social cues.

According to an example on CurrentPsychiatry.com, a young man with ASD had been fired a few days after landing his first job selling used cars because he was “sexually harassing” his colleagues. When questioned, he said that he was only trying to be “friendly” and “practicing his social skills.”

Autistic Behavior 4: The offending behavior is a result of a comorbid diagnosis.

Autism can present with several comorbid conditions, such as schizophrenia, ADHD, depression, psychosis or seizure disorder. It is critical to look for an underlying cause. In higher-functioning persons with ASD, violent crime is almost always precipitated by a comorbid psychiatric disorder.

Most people with ASD are neither violent nor criminal. There is a need to educate the criminal justice system regarding the special challenges faced by persons with autism. A defendant with autism has no physical signs of disability and is often misunderstood and mistreated.

What to do when encountering violent behavior and autism is suspected

  • Confirm the ASD diagnosis based on developmental history and any training you have received
  • Screen for comorbid psychiatric and medical disorders, including depression, psychosis, and seizure disorder
  • Carefully examine the circumstances surrounding the offending behavior

During interviews, remember to allow for more time. When you think you’ve done that sufficiently, double it ;) Also try to understand the person’s communication style before asking the critical questions, and remember that lack of eye contact, vague answers and changing the subject can be typical autism behaviors and not evidence of guilt.

 

image courtesy of Cam Hytche

Lessons I Learned Encountering a Lost Autistic Child at the Air Show

A Guest Post By Austin Harris, Emergency Medical First Responder,
Autism Specialist, CERT Instructor

image courtesy of Cam Hytche

image courtesy of Cam Hytche

Air shows can be fun for kids of all ages… but add autism to the mix and you may have a crisis in the waiting.

I worked as a medical first responder at an air show earlier this year that and learned some valuable lessons after encountering a wandering autistic child. First let’s start with some details:

The call came in to the first aid team from family members that their sibling had gotten away from them, which is somewhat of a normal occurrence at the air show each year. Unfortunately, we were overwhelmed in first aid at the time with several cases so I was not immediately brought in on this one.

My partners started the normal procedure for a lost child while I finished up my call. 30 minutes passed, and by the time I was finished the child still was missing. We were still getting information from the family members, who were kids themselves. Something just did not seem right; the family acted very nervous and seemed to not be telling us something. So I asked the question: “Is the child autistic?”

To our astonishment the answer was, ”Yes he is.” This changed the situation dramatically.

This is where lesson one comes in: interviews. When someone goes missing, it is vital at first contact to ask caregivers about the possibility of special needs and what type of conditions they may have. Brothers and sisters usually have some idea of what kind of needs their siblings may have. With me, my sister knows I am a heart patient and that I’m autistic. She can tell you a lot about my condition, the key is to ask.

It took several hours to locate the child – we had radioed all parties involved in the search the crucial information that the child was autistic. Finally one of our police officers made first contact and was able to bring the child back to be reunited. It had been a hot day and since several hours passed since the child went missing we knew there would be some medical issues.

As an autism specialist, I made primary contact with police as soon as they brought him to us. I identified that I was an autism specialist and would take the lead with the patient. This brings me to lesson two: in the event you have a specialist or officers trained in autism on site let them take the lead, because they can provide specific insight and support, where other team members may not be able to.

Once in my care I took the child to his family and I had two other team members from the Hope Animal Assisted Crisis, who had their K9 crisis intervention and therapy dogs with them, to provide care and comfort. This was the key to it all. The child did not open up to us immediately but opened up to the dogs first. This is my third lesson: use your resources and trust your team members – even your canine team members! They, too, can help you help your patient.

I’m so glad the situation ended on a positive note. It could have had an entirely different outcome. I learned a few lessons from this experience.  

Missing autistic child lesson 1:

When someone goes missing, it’s crucial at first contact to ask caregivers about the possibility of special needs and what type of medical conditions they may have. Even brothers, sisters, aunts, uncles or close family friends usually have some idea of what kind of needs the family member may have.

Missing autistic child lesson 2:

Autism specialists or autism trained officers are needed on site at large events and should be given the primary responder role because they can provide specific insight and support which other team members may not have.

Missing autistic child lesson 3:

Use your resources and trust your team members – even your canine members! They can help you establish a rapport that will pave the way for you to communicate with and provide care to your patient.

 

pokemon go safety tip

Autism Safety Tips for Playing Pokémon GO

pokemon go safety tip

image courtesy of imgur.com

Sometimes, autistic people can be a bit rigid in their behaviors and averse to new experiences. My daughter, especially, who has a high level of social anxiety, has a really hard time with any type of change or new experience. My son is more open to new opportunities, but due to being more susceptible to sensory overload our options outside the home are more limited.

Regardless of the specific reasons, the result remains the same: they are less adventurous or open to starting conversations. According to this articlePokémon GO seems to be successfully encouraging some individuals with ASD to explore the world a bit — and, just as importantly, to engage in conversation with other Pokémon fans in the process. I say individuals because we all know it’s not just kids playing this new viral sensation ;)

On the flip side, an EMT, I’ve already witnessed some nightmare calls as a result of this game. I’ve responded to a couple of motor vehicle accidents, a pedestrian vs. auto, and an assault (mugging) – all directly related to someone playing Pokémon GO and NOT PAYING ATTENTION.

That’s why I was thrilled to discover a Pokémon GO Safety Checklist from Safe Kids DeKalb County whilst I was scrolling through my Nextdoor news feed. Here are the key takeaways from these safety tips:

Be aware of your surroundings and watch where you are going. Make sure you pay attention to where you are walking. I never advocate constantly staring down at your phone regardless. It is a great way to announce to predators that you are an easy target. Get into the habit of frequently looking up while you are on the phone. Situational awareness!!

Make sure somebody knows where you are going. Evidently the nature of Pokémon GO is that Pidgeys, Zubats and Weedles (oh my!) keep popping up on the map, a little farther away each time. That means you or your child could see another Pokémon just a little farther off and venture away into unsafe territory. Wandering is already an issue for so many autism families.

If you play at night, only walk in well-lit areas. Pokémon pop up everywhere, at all hours. It’s fine to find Pokémon in the park or on the street, but stay off other people’s property and vacant, boarded up buildings and homes. Don’t venture into sketchy areas because you are tempted by a rare Dratini sighting!

Do not drive a vehicle, ride a bicycle, or skateboard while playing. You should always hunt Pokémon on foot. It’s illegal to text and drive, so PLEASE don’t try to catch these invisible creatures while doing any of the above activities.

By the way, many of the calls we have seen have involved adults playing the game, not just kids. These tips are for everyone!

SIDE NOTE: The creator of Pokémon is autistic! My son proudly did a class presentation on Satoshi Tajiri in 2nd grade as soon as he found out they shared autism in common.

You can download the Safe Kids Dekalb County Pokémon GO Safety tips here!