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 and Sleep Deprivation

Posted on December 6, 2015 by SpiritOfAutism

As an autism parent, I’m no stranger to sleep deprivation. When my son was a toddler it used to take HOURS to get him to sleep. If (not when) I was successful, he would wake up around 1 am, just as I was going to bed. Nothing would get him back to sleep – not letting him “cry it out,” not inviting him to come sleep with Mom in bed, not removing all toys in his room (he would then take apart the electrical outlet with his bare hands), not making his room completely dark with special curtains. The boy was up.

Then, after three our four hours of desperately trying to get him back to sleep, he would slip off to dream land right about when my alarm would go off for me to get up for work. FUN times!

Although I don’t need to monitor my children as closely now that they are teenagers, their sleep patterns still affect our day-to-day lives. Not only are their schedules perpetually varied (often reversed), when they do sleep it is typically broken.

Disrupted and insufficient sleep can result in daytime sleepiness, learning problems and behavioral issues such as hyperactivity, inattentiveness and aggression. Recent research in children with ASD demonstrates that poor sleepers exhibit more behavior struggles than good sleepers.

Getting adequate sleep helps muscles, bones, and skin grow and repair and fix injuries. Sleep is needed for our body to stay healthy and fight sickness by helping our immune system. There is a lot more at stake than simple drowsiness.

Why do people with autism have difficulty sleeping?

My story is not unique – sleep disorders tend to go hand in hand with autism. It is estimated that 83% of autistic people have difficulty sleeping. This can include trouble falling asleep, restlessness and poor sleep quality, thrashing about, and early rising.

There is no solid research on what causes sleep disorders in autistic individuals. The two strongest theories are misinterpreted social cues and the irregular release of the hormone melatonin.

People typically use their body’s circadian rhythms, the light and dark cycles, and social cues to know when it’s time to retire for the evening. We may see others getting ready for bed or have a sense of the next day’s schedule, which helps dictate the start of our bedtime ritual.

Children with autism fail to understand social cues and the big picture. Even after clearly repeating my expectations to my son (e.g., ten more minutes of this card game and then you must brush your teeth), he will still start a new game when the timer goes off. He’s not stalling or manipulating me for a later bedtime, he just doesn’t understand the social cue I have laid out.

Additionally, the body uses melatonin to regulate sleep/wake cycles. It creates melatonin with the amino acid tryptophan, which has been found to be either higher or lower than normal in autistic individuals. In a normal functioning system, the melatonin levels will rise at night and dip during the day, in response to the dark and light. People with autism may not release this hormone at the correct times.

How does this information apply to emergency responders?

Increase in sensory processing issues. When you respond to a call involving someone with autism, keep in mind that sleep deprivation results in an exhaustion cycle that exacerbates sensory overload. If you have taken my autism training class you may be trained to immediately be aware of how the surroundings and environment can affect an autistic person’s sensory processing issues. Even if there is nothing obvious to you (lights and sirens, crowds gathering) a person with autism may still be prone to a sensory meltdown if they are sleep deprived.

Drowsy driving. According to the National Sleep Foundation’s 2005 Sleep in America poll, 60% of adult drivers – about 168 million people – say they have driven a vehicle while feeling drowsy in the past year. The National Highway Traffic Safety Administration conservatively estimates that 100,000 police-reported crashes are the direct result of driver fatigue each year. This results in an estimated 1,550 deaths, 71,000 injuries. While these numbers are not autism-specific, be aware that drowsy driving may play a large role in MVAs you may respond to.

Increased aggression. It is common knowledge that a sleep deprived individual is more easily irritated and more likely to be angry. It has been discovered that the prefrontal cortex is always active when one is awake and is even more active when awake for long periods of time. The only time that activity in the prefrontal cortex ceases is during sleep, when it is allowed to regenerate. A lack of sleep may correlate directly to one’s emotional control, decision making, and social behavior.

I know there aren’t really any “tips” for you in this week’s edition, just some more things to be aware of as you do scene size up and engage with those on the spectrum.

I’m about to enter a whole new world of sleep deprivation as I start my new 1645 to 0600 shifts while trying to maintain some semblance of a day job and continue to homeschool my autistic teens. I look forward to bringing you exciting new tips from the field as I embark on a new emergency responder journey!

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!

1 in 45 Children Now Diagnosed with Autism: Should We Be Worried?

Posted on November 15, 2015 by SpiritOfAutism

image courtesy of freedigitalphotos.net

It’s time to update my website, brochures and training materials again… according to the latest numbers released from the CDC this past Friday (the 13^th!), 1 in 45 children in the United States has an autism spectrum disorder.

According to livescience.com, this new report is based on data collected during the yearly National Health Interview Survey, from interviews of parents about their children.

The CDC’s previous estimate (yes, I said estimate) put the rate at 1 in 68 children. Though this looks like another significant increase in a short amount of time, there are some other factors at play.

There is an increase in autism awareness now among parents and healthcare providers that was lacking in past years. Some kids were automatically labeled as having a developmental disability rather than being diagnosed with autism. There have also been recent changes in the diagnostic criteria and symptoms used to describe ASD.

As an autism diagnosis is becoming less and less of a stigma in our society and there has been an exponential increase in services and support, doctors are being more thorough and less likely to “under-diagnose.”

In this latest study, the way data was collected has also changed, which may play a role in the increased numbers. Putting the question about autism second in the parent surveys, before the question about other developmental delays, resulted in the data showing a higher prevalence rate for ASD and a lower prevalence rate for other developmental delays. The opposite seemed to occur in 2011 to 2013, when the questions were the other way around.

Though there is somewhat of a divide in the public opinion of increased number – broader diagnostic criteria versus food and environmental factors – most experts feel these latest results are probably a more accurate measurement of the true prevalence of autism.

My question is, are we even taking into account how many PARENTS are now getting a diagnosis of autism after their child’s diagnosis? I have seen this so much – parents who thought they were simply “quirky” or had other diagnoses are now putting the puzzle together for themselves and finding great relief in better understanding their sensitivities, thought processes and social struggles. What about all the females with autism that are either diagnosed in their late teens/early 20s or NOT AT ALL because their behaviors don’t fall under the “classic” signs of autism typically seen in males?

My guess is there are a lot of awesome NEURODIVERSE individuals walking around that have an autism spectrum disorder – our specialists, our innovative thinkers – that are changing the way our world works.

My favorite blog post from Stark Raving Mad Mommy is called “Little Specks of Autism.” She says, “More and more, I see it in myself, my family, strangers. Not full-blown autism; not something that hampers life to the point of needing intervention. Just specks of autism. Our anxiety, our OCD, our sensory issues, our weird selective hearing issues are all little specks of autism.”

Should the 1 in 45 worry us?

I don’t think it’s even important, honestly. As emergency responders, here’s what is:

Is your patient/victim/(even) perp having an overwhelming sensory response to his or her environment?
Are they experiencing communication difficulties?
Are they unable to look you in the eye when you’re speaking to them?
Can they process and understand exactly what you are asking of them or telling them?

If the answer is no to any of these, the next step should not be to fine-tune a diagnosis but to treat the person. We can try to recognize a challenging behavior not as someone who’s giving us a hard time, but someone who’s having a hard time. Whenever possible, using the methods I teach in my autism training, we can adapt or modify our response if it makes sense and the scene is safe for all involved.

Autism Tips for Emergency Responders: Pain Perception

Posted on November 1, 2015 by SpiritOfAutism

image courtesy of freedigitalphotos.net

Identifying sensory issues have always played a large role in autism. In fact, it’s what finally led my son to a correct diagnosis. I spend nearly one-third of my autism training class talking about sensory processing and how people with autism perceive the world, because I believe that once emergency responders understand what’s physically going on with someone – with their brain and nervous system – they may recognize them as autistic on a scene and possibly adapt their response to de-escalate or prevent a meltdown.

In addition to sensory issues, it is known that someone with autism may not have the same response to pain as a neurotypical person. That may mean that an autistic individual could have a severe injury and be completely oblivious to it, or have a completely inappropriate response.

Few investigators have looked into how people with autism experience pain. New information suggests, according to unpublished research presented at the 2015 Society for Neuroscience annual meeting in Chicago, that autistic people show abnormal brain responses when a painfully hot object is placed against their skin. These new findings come from one of the first brain imaging studies of pain processing in autism.

SpectrumNews.org reported that in the study, 17 adults with autism and 16 unaffected adults were placed in a functional magnetic resonance imaging (fMRI) scanner with a small piece of metal strapped to one calf. The metal heated up over three seconds to 120 degrees Fahrenheit — hot enough to hurt, but not to cause injury. The metal stayed hot for 12 seconds, then cooled to room temperature. The researchers measured participants’ brain activity through a dozen of these cycles of pain and relief.

The brain’s response to pain has three phases: early, intermediate and late. The study showed that people with autism had very similar levels of brain activity as the neurotypical control group during the early phase, or the first seven seconds of heat. The initial pain processing showed nearly identical brain activity in the somatosensory cortex, a brain region that governs touch.

However, it was during the last five seconds of the heat and cool down that showed dramatic differences. After the painful stimulus ceased the brain activity in the control group was still responding. It was noting that the body was in pain and logging it for future memories. In the autistic group, all brain activity around the pain center was completely gone once the pain ceased.

This suggests that, while the initial processing of pain may be the same in both groups, the later steps that relate to the cognitive and emotional evaluation of the pain are definitely not.

I always tell the story about how my son – who has been executing self-taught computer coding to create his own video games since age nine – will touch a hot stove, burn his hand, and go back and do it again. I always believed this was due to his inability to think through or process cause and effect connections and their consequences (and that’s still part of it). However this study may help me understand more about my son, and help clinicians get a better handle on pain perception in autistic individuals they treat.

Halloween Safety for Autism Parents and First Responders

Posted on October 25, 2015 by SpiritOfAutism

Halloween has always been the most important holiday in our house. My daughter would beg me to put up the decorations on September 1^st, and then submit long-winded arguments for putting Santa hats on the Halloween décor instead of taking it down for the holiday season.

Trick or treating is another story. Take one elaborate but sensory-aggravating costume, spooky lights and decorations, crowds of loud children on the streets, and possible sugar and chemical dye sensitivities from loads of candy… and you may have created the perfect recipe of a meltdown. Also, there are rules about how we knock on doors and how we talk to people that are extremely difficult for my son to understand and comply with.

What about Halloween safety? On average, twice as many children are hit and killed by cars between the hours of 4pm and 10pm on Halloween compared to the same timeframe on any other day of the year, according to Safe Kids Worldwide. Emergency Departments often see other Halloween related injuries such as eye injuries from sharp objects and burns from flammable costumes.

Add autism to the mix and Halloween can become a nightmare for parents and a challenge for responders.

Here are some tips for a parents and caregivers for a safe and enjoyable Halloween, followed by what safety issues to be aware of as a first responder:

Autism Halloween Safety Tip #1: Costumes

Let your child practice wearing their costume at home for at least a week in advance. This gives you time to make any last minute modifications and time for your child to get used to it. I wish I had a nickel for all the times it took me to learn this one.

Avoid costumes with masks or hats that restrict sight or movement. It may be worth it to start with an item of your child’s own clothing or a Halloween t-shirt. Also avoid costumes that require extra accessories – your child will not want to carry them for long and they also may contribute to tripping or other safety hazards. Trust me on this one.

Autism Halloween Safety Tip #2: Trick-or-Treating

Be aware of any homes in your neighborhood have displays with lots of gore and special effects so you can avoid them.

Use repeated social stories for safety tips about crossing the street. In addition, carry glow sticks and a flashlight if you are going out in the dark.

Make sure your child wears some type of identification in case of wandering. We love If I Need Help, an amazing company that offers unique QR Codes for individuals that may wander via patches, shoe tags, ID cards, dog tags, pins, clips and more.

Create a visual schedule that includes a map of where you will go. It’s also a great idea to practice trick-or-treating at home the week before Halloween: take turns answering the door to give out the candy and being the trick-or-treater.

Autism Halloween Safety Tip #3: The Swag

Make a plan for how you will handle candy consumption. A gluten or dairy intolerance may be an issue with Halloween treats, as are food dyes and extra sugar. Decide the candy-eating rules in advance and write them down so they are clearly understood before the actual night.

First Responders, what do you need to be aware of?

Autism Halloween Safety Issue #1: Inappropriate Behavior

You may run across or be called to a scene due to inappropriate behavior. Perhaps you see a person lying in the middle of the road. Be aware that this may be someone with autism that has completely shut down due to sensory overwhelm and is unable to get themselves somewhere safe to ride it out. You might be thinking, it’s just a child – pick them up and move them. My son is only 13 and he is seven inches taller than me and wears men’s large or extra large clothing size. If he were to shut down in the middle of the road, I would have a difficult time moving him by myself.

Something else my son did in his earlier years of trick or treating was kicking the doors of people’s houses instead of knocking. He wasn’t being malicious or intentionally causing trouble – he had severe impulsivity and was sensory seeking (his nervous system was underactive and craved constant input in the form of hitting, crashing, biting, etc.). As you can imagine, this did not go over too well with some of the homeowners.

Autism Halloween Safety Issue #2: Heat Related Injuries

Autistic individuals tend to have issues regulating body temperature. Here in Georgia it has been known to feel like summer on some Halloween nights. A child’s costume worn over their clothes plus more physical activity than they are used to can cause mild hyperthermia or dehydration.

Also be aware that loose, flowing costumes may catch fire if a person lines their walkway with candles or open jack-o-lanterns.

Autism Halloween Safety Issue #3: Fall Related Injuries

Vision, our dominant sense, is a neurological process and is therefore directly affected by autism. VISION is different than SIGHT (20/20). Vision is a neurological process that takes place in the brain. 65% of the brain is “wired” for the visual system and 80% of what the brain processes is via the visual system. It helps to think of the visual system as a major highway, and all other senses as exit ramps. The highway must be in great shape – no potholes or detours – so that you can efficiently and quickly get to your exit ramp (i.e., conduct your daily life). Vision has a huge role in guiding movement, touch, and balance.

Adding a mask with limited vision, loose costumes, and obstacles in strange driveways can compound these issues and cause someone to trip or fall.

Autism Halloween Safety Issue #4: Seizures

Nearly one-third of people with autism have Epilepsy, a brain disorder marked by recurring seizures, or convulsions. For about three percent of people with epilepsy, exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures.

Some houses use strobe lights or flashing lights as part of their Halloween decorations.

Autism Halloween Safety Issue #5: Wandering

If you encounter someone trick or treating alone, look for devices or IDs that may identify the person as autistic. They may have bolted away for their group or caregiver and it is likely they may head toward something shiny or a nearby body of water.

Keep a careful eye out for wanderers for a few days after Halloween; I’ve heard from other parents that their child continued to trick-or-treat on their own the next day or even following week!

Autism in the Emergency Room

Posted on October 18, 2015 by SpiritOfAutism

image courtesy of horizonhealth.eu

Autism families learn fast and early how to effectively anticipate and manage a crisis. When that crisis involves a trip to the emergency room, it can escalate quickly due to the sights, sounds, smells, and accelerated pace of the environment, which can quickly overwhelm an individual with autism.

Recognizing that someone has autism is only one part of a successful emergency room experience. Here are some other tips for the ED staff to help ensure a safe and manageable experience for everyone.

Emergency Room Tip #1: Decrease Wait Time if Possible

Recognize that simply entering a noisy, crowded waiting room may trigger acute anxiety and sensory overwhelm for a person with autism. This can result in escalated and challenging behaviors. If at all possible, accompany the patient and primary caregiver to a quiet room for initial assessment and registration. If the triage nurse determines the patient will need to wait to see a physician, provide a quiet place to do so.

Dim overhead lighting if necessary and possible and monitor the patient continuously for signs of overstimulation.

Emergency Room Tip #2: Caregivers Are a Wealth of Information

Most autism parents or caregivers are well versed in their child’s medical information and are extremely helpful in gaining cooperation. Use this information! Make sure to ask early about the patient’s primary form of communication; if they are non-verbal, make sure they have a method of communication familiar to them, such as a paper and pencil, pictures, gestures, or a communication device.

Find out from the caregiver what has worked in the past when at medical visits, what their particular sensory issues are, and what their heat, cold and pain tolerances are.

Emergency Room Tip #3: Explain and Demonstrate First

Order and expectation is everything to someone with autism. Try to explain procedures before performing them to help alleviate anxiety. Use simple words and drawings if necessary.

Demonstrating what you are about to do on yourself, a colleague or the caregiver is also helpful. These modifications call for extra effort and understanding, but go a long way toward a positive experience for everyone involved.

Finally, recognize that people with autism may be on many different medications due to comorbid conditions. They can be prone to allergic reactions or dangerous drug interactions. Only administer medications when absolutely necessary.

image courtesy of http://resources1.news.com.au/

5 Ways Autism Skills Can Help Emergency Responders On Scene

Posted on October 11, 2015 by SpiritOfAutism

image courtesy of http://resources1.news.com.au/

The nature of my training classes unfortunately tend to focus on the struggles and deficits side of the autism spectrum, as this is the primary way for responders to quickly identify someone as autistic on the scene of a crime, fire, disaster or medical call and potentially adapt their response. In an emergency situation, being able to recognize the appropriate signs and adjust communication can be the difference between a potentially negative and positive outcome.

I tend to go a bit deeper in my weekly articles, offering more detailed techniques for de-escalating dangerous behaviors, discussing comorbid medical conditions for better patient assessment, proper protocol for handling service dogs, or explaining why people with autism are often drawn to water. What happens if we flip that proverbial coin for a minute and ask, how can someone with autism be helpful on scene?

People with autism display a wide range of intellectual abilities. Some show exceptional talents despite some functional challenges. Along with the struggles, autism can bring individual strengths along with special abilities, such as strong memory skills, math skills, three-dimensional thinking, musical ability, artistic ability, honesty, and the ability to intensely focus on an interest.

While only 10 percent of people with autism have savant syndrome (a condition in which a person with a disability such as an autism spectrum disorder demonstrates profound and prodigious capacities or abilities far in excess of what would be considered normal), many do have special abilities. These may include:

Calendar calculation – identifying the days of the week on which any date fell or will fall in a wide span of years
Memorizing large chunks of facts about specific subjects
Dismantling and reassembling complex machines
Working with computers

While verbal instructions are more challenging, people with autism do have advanced visual-spatial abilities, such as solving puzzles or matching items that display some sort of pattern.

How could these things help during an emergency call?

Autism Skill #1: Rote Memory Ability

An excellent rote memory – memorizing large amounts of material or storing huge lists of items in their minds and repeating them accurately can be a huge help when piecing together what may have happened on scene. This could be recalling details of an auto accident or trying to determine how a crime was committed.

Autism Skill #2: Details and Patterns

To piggyback on rote memory, the ability to notice small, individual details is a huge asset on any scene. While autistic individuals may not be able to see the big picture or piece together the information to determine meaning, they can not only recite details no one else may have noticed but often see a distinctive pattern in those details.

Autism Skill #3: Calculations

Some people with autism also have quick mathematical calculation skills – they’ re able to mentally add, subtract, multiply and divide large numbers at astonishing speeds. This could be helpful, again, in any line of questioning where numbers or specific times are important to the situation.

Autism Skill #4: Artistic Talent

Being masterful with expressing yourself through drawings can aid in finding out what happened on scene, especially if the person with autism is nonverbal. Even if they are able to communicate in a typical way, drawings can both relay missed details of the scene and the person’s perspective – how they experienced the situation.

Autism Skill #5: Musical Talent

How could someone’s musical talent possibly be of assistance during an emergency?

Many people with autism spectrum disorder have outstanding abilities in tone recognition; they can be highly methodical listeners and are able to access musical details more readily than others. The ability to mimic an exact sound they heard in perfect pitch – such as the order of numbers punched in a keypad – is definitely a skill that could come in handy on scene.

I know it can be challenging to communicate and interact with people with autism on scene, especially if they are experiencing sensory overwhelm from the noise and chaos of the emergency situation. But remember, autistic people are typically good-natured and honest, and almost always have a genuine desire to help. Why not welcome their skills and abilities? You may just end up with critical details that no one else was able to see!

Using Redirection to Avert Harmful Stimming

Posted on October 4, 2015 by SpiritOfAutism

Repetitive behaviors such as spinning objects, opening and closing things repeatedly, rocking, arm-flapping, squealing, making loud noises or even hitting are common in those on the autism spectrum. Often ritualistic, they are known as perseveration or self-stimulatory behavior (stimming). While they may seem pointless and “weird” to us, they fulfill a very important function for the person carrying them out, such as relieving anxiety, counteracting and overwhelming sensory environment, regulating the nervous system or simply letting off steam. The frequency and severity of the behaviors varies from person to person.

When Stimming Becomes Dangerous

When responding to a call involving an autistic individual, you may encounter someone stimming in response to the stress of the emergency situation you’ve been called to. I always advocate letting the behavior continue, as it typically helps the person self-calm. The only exception is when they are hurting themselves or others. Self-calming may quickly escalate into self-injurious behavior such as hitting themselves, head banging, chewing their hands or biting themselves.

Redirection by definition means to direct again; to change the direction or focus; to channel into a new direction. It is a tool that can help interrupt the behavior. If the scene is safe you may be able to use this technique to modify harmful behaviors and help direct the person to an alternative, safer one. It may take a few attempts, but can successfully take the focus off negative coping behaviors and de-escalate the situation.

To redirect you need to quickly interrupt the negative behavior, with as minimal attention as possible. Of course, done at home in a calm environment a caregiver has an opportunity to teach, practice and continue positive reinforcement until the person can successfully recognize and modify the behavior. In the field, you may have to use a more dramatic interrupting method. Remember that you are not punishing the person for inappropriate behavior – a behavior that is serving a purpose for them – you are more or less “shocking” their system to allow for a new focus. This may look like using a different tone of voice, issuing a job or task, or even doing something outlandish, like breaking out into song. Yes, I have done this before with successful results!

I recently saw this on Facebook… definitely a true story for me.

Initially you want to start with a high-probability request: one the person is LIKELY to comply with on the first request, without further prompting (“point to your nose”, “stand up”, etc.). Follow that with a series of two or three more high-P requests together and one low-P request (one the person is UNLIKELY to comply with). Keep it simple and offer praise after each successful high-P compliance. Extend and magnify praise when they comply with the low-P request.

When you are redirecting behavior, remember the whole point is to emphasize the replacement behavior that you want. If there is no replacement option, it will be impossible to redirect.

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

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.