Autism is Not a Boys’ Club

Posted on August 28, 2017 by SpiritOfAutism

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:

Despite autism being a neurological condition, it is still viewed as a mental health issue by many professionals
Females are often misdiagnosed or overlooked altogether
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.

Beyond Bullying: Autism and Sexual Abuse

Posted on May 24, 2017 by SpiritOfAutism

I’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.

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

Posted on February 9, 2017 by SpiritOfAutism

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.

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.
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.
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.
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.
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.
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.
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.

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

Posted on January 10, 2017 by SpiritOfAutism

I’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 Tips for Emergency Responders: Adult Meltdowns

Posted on January 6, 2016 by SpiritOfAutism

image courtesy of freedigitalphotos.net

Often when I begin one of my autism training classes for public safety professionals I have to quickly debunk the myth that autism is a “kid” thing. Especially when we talk about meltdowns.

Yes, I talk about the differences between a meltdown and a tantrum – which is much needed information – but meltdowns are very real occurrences for adults on the spectrum as well.

In fact, the situation can be even more complicated and dangerous when responding to a call involving an adult experiencing a meltdown, especially if they have become nonverbal in the midst of it, which is common.

Meltdowns occur most frequently in autistic children due to an overwhelming sensory environment. My co-trainer, Austin, tells me that he has developed coping methods to deal with sensory overwhelm in public places (note: the sensory issues do not go away, he’s learned to manage them or have an exit strategy). As an adult, meltdowns can also occur from sudden change, not getting understandable answers to a question or being caught off guard.

The early signs of a meltdown may include stuttering or difficulty answering questions, loss of eye contact and the ability to focus, increased stimming, and eventually a complete shutdown of speech and communication.

This is very dangerous because a person experiencing a meltdown is no longer aware of their surroundings, and they may be unable to spot danger. There is also an increased tendency to flee from the situation in attempt to retreat into safety.

Early signs are helpful to know, but the reality is, by the time we as responders are called to a scene, a meltdown will most likely be in full swing. Meltdowns typically go one of two ways: explosion or implosion. And once it starts, there’s no going back for the person experiencing it.

It’s not an emotional outburst or behavior issue, it is a physiological occurrence that must run its course. If interrupted, it will likely start all over again in a few minutes.

Approaching an adult that is unable to speak, potentially hurting themselves or others (such as head banging), trying to flee or being in an odd physical position can be very confusing to a first responder. After ruling out immediate medical threats, our tendency is to either try to apply logic to the situation or treat the person as combative and non-compliant.

As always, safety comes first! But I think understanding what meltdowns are like for those experiencing them can give us critical insight so we can help.

In an article titled “Anatomy of a Meltdown,” a woman with Asperger’s shares her experience of having a meltdown as an adult. Some of my favorite quotes from this post are:

It feels like a rubber band pulled to the snapping point.

What I don’t want to hear:

It’s okay.
(It’s not.)

You need to pull yourself together.
(I will, when I’m ready.)

Everything will be fine.
(I know.)

It feels like the end of the world. It feels like nothing will ever be right again.

Meltdowns are necessary. Cleansing. An emotional purge. A neurological reboot.

It feels like my whole body is thrumming, humming, singing, quivering. A rail just before the train arrives. A plucked string. A live wire throwing off electricity, charging the night air.

Complex speech feels impossible. There is an intense pressure in my head, suppressing the initiation of speech, suppressing the formation of language.

A shutdown is a meltdown that never reached threshold level.

Imagine running as far as you can, as fast as you can. When you stop, that feeling–the utter relief, the exhaustion, the desperate need for air, the way you gulp it in, your whole body focused on expanding and contracting your lungs–that’s what crying feels like during a meltdown.

Please don’t touch me. Don’t try to pick me up, move me, or get me to change position. Whatever position I’ve ended up in is one that’s making me feel safe.

There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The head banging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat.

This is so much more than someone having an emotional outburst or acting out because they don’t get their way.

We never know what we’re rolling up to on scene, and we must always do what is safe and makes the most sense with the information and tools we are given. Don’t forget to look for medical bracelets, autism-specific phone apps or alternate IDs… they can provide extremely helpful information!

I hope that this viewpoint is another tool for your toolbox to help recognize that a patient or victim may have autism, and that they may be amid a meltdown.

Someone experiencing a meltdown needs patience, space and time if the situation allows it. It would be ideal to have a trusting friend or caregiver on scene to both provide pertinent information and be there for the recovery period, whether that’s on scene or en route to the hospital.

Over to you…

Have you experienced someone with autism having a meltdown? Were you able to help? Share your comments below!

Autism, Depression and Suicide

Posted on December 14, 2015 by SpiritOfAutism

image courtesy of cultureofempathy.com

Today I read a very moving post on EverydayAspergers.com, a blog that helps raise
awareness about Asperger’s and females. The entire article really opened my eyes to my 17 year old daughter’s mental and emotional struggles as she tries to make her way in this world, yet feels the need to apologize every day for simply existing.

I was always bewildered by her low self-esteem, as I raised her with abundant compliments, unconditional love and unlimited support. I made it known to her that her voice and opinions MATTER and are validated.

Being raised in a very abusive and dysfunctional family setting myself, it makes sense to me why I struggled to overcome worthiness issues for so many years. But my beautiful, brilliant, quirky and ridiculously talented little girl faces similar obstacles, and after reading this I understand a little bit more about Asperger’s and the female brain.

Here are a few of the highlights that really stood out to me:

The times I need to curl in a corner and cry with the imaginary arms of someone around me, and then sobbing uncontrollably, as I realize like all the times before, there is no one there.

The truth of my isolation and how no one will ever be able to slip into my mind and understand.

Counting the minutes until I can sleep, hoping the sleep will help me escape the increasing thoughts of fear.

Realizing again and again I am different in a world that seems riddled with sameness. Understanding that the depths of me are so deep that even I get lost with no hope of escape.

Feeling like an alien. Feeling like an alien. Feeling like an alien.

The way in which I step back as observer and watch myself freak out and wig out and create chaos out of nothing, but still being unable to stop myself.

Thinking anything I say isn’t needed, is irrelevant, or will just bury me and leave me alone.

You can read her whole post here.

This prompted me to do some additional research on Asperger’s and suicide.

On the Spectrum News website I learned of a published study from The Lancet Psychiatry, revealing that two-thirds of a group of adults diagnosed with Asperger syndrome said they had thought about committing suicide at some point, and 35 percent had made specific plans or actually made an attempt.

35 percent!

For those with Asperger’s, struggling their whole lives to fit in can take a toll on them emotionally. Add to that autistic cognitive patterns such as the tendency to perseverate or get stuck on a particular line of thought and it can directly lead to vulnerability toward suicide.

What makes an Aspie teen a higher risk? AACC.net says the number one reason is social isolation and rejection. Aspies tend to have decent friendships in elementary school, but there is sudden shift in middle school.

Peers start noticing differences in behaviors; friends from elementary school suddenly distance themselves, which can be confusing (and terrifying) for the Aspie, who wonders why these people were friends in 5^th grade but not in 6^th.

Adolescence is a time students are seeking identity and peer approval. But odd mannerisms, avoiding eye contact, lack of filters for appropriate conversation, not understanding sarcasm or idioms, and constant interruption are just some of the things that cause an Aspie to be shunned or bullied as a teen. Increasingly harder schoolwork and being left out of group projects or teams can trigger anxiety and depression.

Tony Attwood, a clinical psychologist known world wide for his knowledge of Aspergers Syndrome, speaks about the Aspie tendency to catastrophize, making it challenging to regulate their emotions. Additionally, the amygdala of an Aspie tends to be 10-15 % larger than in neurotypicals, therefore inflating the “danger alerts” in the fight/flight/freeze system.

This means something that is a 1 on the scale of a neurotypical person may easily register as a 10 to an Aspie. As the brain sends signals that start the sympathetic nervous system racing, the person with Asperger’s may be the “last to know” about their heightened emotional state, making them just as surprised as an observer when emotions and behaviors have escalated.

How Can We Help?

The goal for crisis intervention is to increase the person’s sense of being emotionally supported as well as their psychological sense of possible choices.

Autism Help lists some the following strategies:

Establish rapport (e.g. ‘I’m listening and I want to support you’)

Explore the person’s perception of the crisis

Focus on the immediate past (e.g. a recent significant event or problem) and immediate future

Develop options and a plan of action

Increase the options available to the person and the number of people available to help

Try to involve appropriate people in the person’s natural support system

Encourage them to develop a plan including resources and support in the immediate future. Write down the steps of a personal safety plan and suggest the person carry them around for fast access to support.

Much like the Disaster Psychology module taught in CERT, you want to avoid certain phrases when communicating, such as, “Everything will be fine, don’t worry,” and “Come on, it isn’t that bad…” False reassurances, minimizing feelings, and intrusive questioning are inappropriate responses for individuals at risk for depression and suicide.

Instead, practice active and reflective listening techniques when the person shares their feelings with you and paraphrase and summarize often.

Autism Tips for Emergency Responders: Inappropriate Words

Posted on November 29, 2015 by SpiritOfAutism

Ah, the art of communication. It comes so easily to most of us. But for someone with autism, even if they are completely verbal, it is a almost always a challenge.

Yesterday my son was having a really hard time regulating his emotions, so I suggested we take a leisurely walk together without the dogs. (It turns out walks are actually enjoyable when you’re not being dragged by two 100-pound huskies!) On a quiet side street, we encountered a neighbor walking her two dogs. Exchanging typical pleasantries she asked, “How are you?”

My son replied, “Bad.”

“How can you be bad? It’s a holiday! Everyone’s happy during the holidays! I’m sure you had a nice Thanksgiving,” she said.

My son looked up and said, “I’m Polish.”

“Uh… okay… well, bye?” and she slowly backed away from us, not knowing what else to say.

Two things happened here for my son that I understood perfectly but seemed extremely odd and unnerving for someone else. When he said he was bad, he was just being honest. He wasn’t feeling well before the walk, so he answered the question. He wasn’t aware that when people say “how are you” there is an unwritten rule that says you should reply with “fine, and you?” instead of saying what’s really going on.

The second, unrelated response he provided was completely inappropriate in the neighbor’s eyes. In reality, my son knew he was supposed to say something because there was a pause and silence, but he had no idea what he was expected to say. So he said the first thing that popped into his brain.

My daughter with Aspergers also has experiences with inappropriate words but in a different context. For her, someone will make a remark and she starts to panic from the stress of figuring out an appropriate reply. Often she will try to soften the awkwardness with a snarky but humorous remark that ends up sounding very suggestive – absolutely furthest from her intention!

She may also be in a gathering where people are eating and innocently recount gruesome details of a video she saw or recite what fluids came out of our dog when she had her puppies. Then she sees everyone shocked and staring at her and has no idea what she did wrong, which kicks off several levels of feeling ashamed and anxious followed by a complete shutdown.

I read today on the Everyday Aspergers Facebook page that “…the heightened anxiety of an Aspie is often a result of the act of living in a society with countless unspoken rules and expectations.”

What does all of this mean for emergency responders?

Imagine responding to a motor vehicle accident and you approach an adult-sized teenage patient and ask his name, if anything hurts, what happened, etc. What if he answered all of your questions with the word “cheeseburger,” or, better yet, hums the theme to a Super Mario Brothers video game?

You’d immediately start thinking altered level of consciousness, head injury… after all, inappropriate words is assigned a 3 under “Best Verbal Response” on the Glasgow Coma Scale!

What if you are a police officer and ask for someone’s ID, name and where they live and you got the same responses? You might think drugs and noncompliance right off the bat.

Of course, your safety and protocols always come first! However, inappropriate words and responses may not always mean what you think.

Emergency Responder Tip #1: Always consider a medical reason first

You may know someone with autism. You may have responded to a call before where someone acted the same way and they were autistic. You may have taken my autism training class and learned to look for these signs. Even if you are told by the patient himself that he has autism, don’t immediately assume his responses are “typical autistic behaviors.” They may be, but always rule out major life threats first!

Emergency Responder Tip #2: Look for a caregiver or relative

It may be challenging to get not only medical history, allergies and other vital information from someone with autism during an emergency or crisis but simple assessment information, too! We rely on our patients to tell us where they are hurting but a person with autism may not feel the pain of a serious injury or, if they do, will not have a typical (or appropriate) response to it. Caregivers are a wealth of information, especially when it comes to determining a baseline mental and behavioral status of your patient.

Emergency Responder Tip #3: Look for an alternative ID

More and more products are becoming available to assist people with autism that may not be able to speak or advocate for themselves in an emergency. From medical bands to phone apps to QR codes on patches, IDs or tags, this information is instantly available to responders to provide critical medical history, sensory issues and other facts needed in order to best help your patient.

Emergency Responder Tip #4: Don’t try to analyze it

It is in our nature to try and “decode” or find the hidden meanings in someone’s behavior. Someone with autism may not have any rhyme or reason to what they are saying other than they heard it on a YouTube video or it’s the “phrase of the week” that they have been repeating incessantly. Trying to figure out a correlation between the inappropriate words and what is really happening with the patient will waste valuable assessment time.

Emergency Responder Tip #5: Play along if it helps

If your patient’s inappropriate words happen to be about one of their obsessions, you may be able to leverage what they’re saying into a means of gaining rapport and communicating with them. If you asked a patient if they are hurting anywhere and they reply with “Yoshi!” you may be able incorporate that into your assessment. Maybe you could ask if Yoshi is feeling hurt anywhere from the accident, or does Yoshi know what happened. Or what would Yoshi do if… questions. Maybe the other car was Wario and crashed into Yoshi. Again, this is not something to spend a lot of time on if the answers still aren’t coming, but it may be a way into someone’s world. Use your best judgement here – if you are familiar with their obsession topic and can get them talking about it in a way that’s relatable to your assessment, go for it.

Have you responded to a call that involved inappropriate responses not caused by a medical issue? How did you handle it? Share in the comments section below!

Autism and the Criminal Justice System

Posted on September 27, 2015 by SpiritOfAutism

During the introduction of my Autism Training for Emergency Responders class I talk about how special needs individuals are seven times more likely to interact with first responders, usually due to wandering, comorbid medical conditions and severely escalated behaviors that may mimic mental illness, drug abuse or just plain non-compliance.

What happens when someone with autism enters the criminal justice system? There are currently no statistics going beyond interactions in the field, but it certainly does provide a challenge and opportunity for myriad complications.

Problems with sensory overload, poor understanding of sarcasm, idioms and exaggeration as well as non-verbal communication such as facial expressions and body language can foster inappropriate responses that lead to trouble for the autistic individual. Add to the mix their trusting vulnerability and inability to deal with changes in routine or structure and people with autism often get into trouble without even knowing they committed an offense.

I’m not saying that someone with Asperger’s or autism will NEVER intentionally break the law, but so often these situations get easily misconstrued. The individual may have technically committed an offense, though the criminal behavior might have been an act of impulsivity, with no intent to do harm.

My son will repeatedly make a threatening or, at the very least, rude remark to me and then is shocked when I get upset with him. He has learned to apologize when I tell him he was hurtful or inappropriate, yet he has no idea WHY he’s apologizing because in his mind, he simply made a truthful or logical statement. Or he was repeating something he heard but has no idea what it actually means.

These kinds of “processing differences” could lead to him getting in trouble with the law down the road. The Asperger/Autism Network cites examples of unintentional offenses such as:

Making threatening statements
Inappropriate sexual advances
Being an accomplice to a crime due to the influence of false friends
Making physical outbursts in a public place or within the community

Criminal justice professionals may observe a high-functioning autistic person as appearing “normal” then diagnose their seemingly odd behaviors – such as lack of eye contact, changing the subject and blunt honesty – as disrespectful, evasive and belligerent. Sometimes someone with autism uses loud vocal tones, repetitive motions and laughter as a way to cope with both the anxiety of the situation and the overwhelming sensory environment, which is often misread as guilty and remorseless behavior.

The following strategies will help prepare you for successful interaction and communicating:

Approach the person a quiet, non-threatening manner
Allow more time for processing questions and delayed responses
Do not interpret limited eye contact as deceit or evidence of guilt
Avoid phrases that have more than one meaning or may cause confusion when taken literally, such as “Are you pulling my leg?” or “What’s up your sleeve?”
You may need to repeat or rephrase your question
Stick to narrative style questions rather than “yes” or “no” type questions – they are more reliable
Be prepared to write down or draw out the question for visual processors
Be patient – avoid becoming emotionally aroused and upset
Be aware of sensory processing issues: keep lighting low, limit distracting images, eliminate the presence of non-essential personnel, avoid using perfume or aftershave if possible, and avoid touching the person unless absolutely necessary
Seek assistance from objective professionals that are familiar with autism

Autism Tips for Emergency Responders: Service Dogs on Scene

Posted on September 12, 2015 by SpiritOfAutism

image courtesy of paals.org

If you have recently attended one of my Autism Training classes for emergency responders, you’ll recall a short video of a woman’s service dog that alerts to self-harm while she is having a meltdown. You can view that video here.

While I included that in my training to illustrate an adult with Asperger’s having a meltdown, someone in class brought up an excellent point: how do you, as a responder, recognize a service dog and what do you do with them on scene?

Project Chance explains that autism assistance dogs are somewhat unique. Unlike a guide dog that helps with physical tasks, autism assistance dogs mainly provide emotional support. They can also help with sensory processing issues by giving their handler a focal point, or a way to ground their sensory input when the environment is overwhelming.

Many autistic children especially have no concept of personal safety and are prone to wandering. A child may be tethered to the dog’s harness or the dog may be trained to alert to potential bolt risks.

Dogs can also be tasked-trained to use touch intervention, as well as pressure intervention and mobility assistance when repetitive or self-injurious behaviors occur.

How is a Service Dog Defined?

According to the Americans with Disabilities Act (ADA), service animals are defined as dogs that are individually trained to do work or perform tasks for people with disabilities. Service animals are working animals, not pets. The work or task a dog has been trained to provide must be directly related to the person’s disability.

Service animals must be allowed to accompany people with disabilities in all areas of a facility where the public is normally allowed to go.

The Ohio Department of Public Safety has a great downloadable trifold with tips for encountering service dogs. Here are some highlights from the brochure.

First and foremost, find out your agency’s policies on service animals! This includes how they define a service animal, information about applicable laws and how to comply with them, what to do if the handler is not in a condition to control the animal, proper movement and transport of the service animal, and veterinary facilities with whom there are established agreements for providing emergent care/boarding for service animals.

Next, you must determine if it is a family pet or a true service animal. The law permits you to ask these two questions only:

Do you need the animal because of a disability?
What tasks related to your disability has the animal been trained to do?

By Federal law, service animals are permitted to go wherever the public is allowed, including your ambulance. If it is not possible to keep a handler and their animal together (e.g., the handlers’ medical condition warrants transport by air or prevents the handler from controlling the animal) make sure a responsible party or someone with the handler’s permission can transport the animal safely and reunite them with their handler as soon as possible.

If the dog is being transported with the patient, load the dog last and unload it first, as this minimizes risk of injuring the animal and gives you needed space for maneuvering equipment.

If you must handle the dog, use the leash, not its harness. Use the side door of the ambulance for loading and unloading the animal; avoid open diamond plate gratings as they may injure the dog’s paws. If you need to lift the dog, put one arm behind the back legs, the other in front of the chest and gently lift. Offer to get food and any other supplies the dog may need before transporting.

Overall, try to accommodate the dog as you would a child alone with the patient. Take the dog with you and if the handler is unable to care for the dog at the hospital, attempt to notify a caretaker known to the handler for the dog, if possible.

You can download the entire helpful brochure here.

Have you encountered service dogs on scene? How did it go? Share your comments below!

Event First Aid: The Distraction Technique and Autism

Posted on July 11, 2015 by Austin Harris

As an auxiliary first responder who works first aid booths at community events like airshows, parades, road races, festivals and the like and an adult with Asperger’s, I have discovered some good techniques to aid me in my duties when I am providing first aid for a person and/or child with or without special needs such as Autism.

One technique I love to use is distraction. Distracting an individual helps to interrupt the neurological process that allows a person to feel and know what is happening to them at the current time. We all know when working in public safety we work in pairs for safety, camaraderie, and and other reasons. We are going to add another reason to work in pairs, especially when responding to an Autistic individual who needs medical attention. That reason is for one responder to provide treatment while the other distracts the injured individual with things such as conversation about the patient’s favorite subject, a toy such as a stuffed animal or metal slinky, or even blowing up a nitrile glove like a balloon and drawing on it. Remember that whatever items you use needs to be age appropriate and safe for the child.

Another situation I have encountered is lost individuals. When an individual such as a child or person with Autism, who sometimes cannot communicate or care for themselves, becomes separated from a family member they are usually brought to the first aid room which doubles as the lost and found room. This is so we as first responders can watch over and care for them until their caregiver is found and are reunited. This may take time so you need to have some ways to occupy an individual that may have Autism or similar issues. Some items you may want to keep are crayons and paper, Play-dough, coloring books, and a deck of cards. These items can be used as distraction until the individual is reunited with their family or caregiver. So to recap our new tools and items that we can use with the distraction technique are:

Conversation about patient’s favorite topic or obsession
Stuffed animal
Slinky
Crayons with paper
Coloring book
Play-dough
Deck of cards

I hope these tools and ideas will help you in your future response to an individual in need at an event or large gathering.

Austin is a certified and experienced Skywarn Storm Spotter, Ham radio operator, Community Emergency Response Team Instructor. He is currently pursuing a degree in Criminal Justice at Gwinnett Technical College and hopes to one day pursue an EMT certification and certification as a State of Georgia Emergency Manager. He brings a wealth of knowledge to Spirit of Autism with years of research and experience in emergency preparedness and as an adult with Autism.

Spirit of Autism, LLC

Autism Training for Emergency Responders • Emergency Preparedness

Tag Archives: Asperger’s