9 Everyday Things That Young Adults with Autism May Struggle With

Posted on January 11, 2018 by SpiritOfAutism

It seems obvious that young children with autism struggle with many tasks because of deficits with gross and fine motor skills, sensory processing issues, language delays and more. Naturally, this affects how they interact with their peers. In most cases, an autistic child receives support, therapy and modifications in school to assist with these struggles.

But what happens when you’re a teen or young adult with autism and you’re expected to simply “know” how to do certain things? It’s the little things in life that come easy to us that we take for granted. Once a child is out of school, resources dry up. Parents can teach life skills and social skills as best they can, but we can’t think of every possible scenario that might occur and help our transitioning children prepare for the challenges of adulting.

This list I’ve compiled is just a snapshot into some everyday situations that my children struggle with. Being less proficient at simple life tasks could profoundly affect the way they interact with the world. As parents, we need to continually support and prepare our children. As emergency responders, we need to be aware of these types of everyday struggles, as they can cause a scene to go south quickly if misinterpreted.

Haircuts / Grooming. My son has an extremely sensitive nervous system. Many times for no reason his body feels antsy and overactive, like a million bugs are crawling in his skin. Simple tags on clothing feel like cactus needles on his back. A light pat on the shoulder feels like a taser shock. Haircuts and trimming nails have been an issue with him from infancy. Now, at 15 years old, 9” taller than me and approximately 250 pounds, I can no longer strap him to a chair with belts to cut his hair (don’t judge!). He will fight me if I bring the scissors or buzzer near him. He isn’t being spoiled or malicious, it HURTS to get his haircut. He tries to behave if I bring him to a barber, but he can’t help the wincing and jerking reactions to what we consider a routine activity. As far as his nails go, I still have to wait until he is asleep to cut them! Responder tip: light touch could cause an extreme reaction.
Driving / Night Driving. I don’t know that either of my children will be able to drive. I am going to work with my 19-year old daughter some more, but it is an extreme struggle for her. Her depth perception is skewed, making it seem like cars that are two lanes away are about to hit us. That can spell trouble on these already crazy Atlanta streets. My son simply doesn’t have the reaction time or ability to process simultaneous tasks in order to operate a motor vehicle. Another adult autistic friend of mine does drive, but finds night driving an extreme challenge. This is a simple task we take for granted. When I was growing up, the second you turned 15 you got your Learner’s Permit and your license followed as soon as you were eligible to take the test. As a parent, I am dealing with still having to chauffeur my children around as young adults. Responder tip: remember that someone with autism may struggle with depth perception, reaction time, multi-tasking and night vision. This increases the risk for MVCs.
Making Phone Calls. I was shy as a child. Making calls to businesses or even a new friend was terrifying. Of course, there were no cell phones or texting back then so you HAD to interact with people on the phone… without caller ID! Nervousness and shyness are not the same struggles as my kids have on the phone. When we are at a restaurant or store I make them order or pay to help foster interactions with strangers. Phone calls are difficult. It takes writing out a list of questions with all possible outcomes in order to successfully make a quick call to find out something about a store’s hours or make an appointment. Now, picture how many times we, as adults, have to call our insurance company or a utility company for an error on our bill or a coverage question. Think about the automated menu, what number to press, getting someone live finally and trying to explain your situation, getting told incorrect information and having the ability to ascertain that you can get a better outcome if you ask for a manager or escalate the issue. I picture my daughter trying to argue with one of those companies that automatically charges you for products you canceled… noooooope. Responder tip: be prepared for nervousness and complete shutdown over the phone.
Strangers Knocking on the Door. This is a BIG ONE. It took some major conditioning, social stories, and active drills to get my son to stop opening the door to everyone! I work nights and sleep during the day. There are myriad times when my children are the ones awake to hear someone at the door. Unfortunately, this neighborhood has experienced multiple break-ins and gunshots are often heard nearby. It has been my experience that people with autism are typically trusting and take people’s word at face value. I have had someone knock on the door telling me they were someone I knew, all the while shaking and turning the knob trying to force the door open. I was fortunate to be home and to be the one on the other side of the door with my Glock 36. What if it were my son? I shudder to think of potential outcomes if my children readily open the door to strangers. Responder tip: identify yourself clearly when knocking on a residence door. Be prepared for anything.
Accident or Injury. My daughter’s autism manifests in a lot of anxiety and OCD. This is a good trait when it comes to safety. I’d much rather her call me for every little concern than to do what my son does. He spends a lot of time in his room on his computer. If he injures himself in any way, he simply shuts down right where he is. He doesn’t think to “come get mom” or call for help in any way. Nor does he know how to handle an injury. So he sits there in pain, or in some cases, bleeding, and no one knows. Most of the time my daughter and I frequently check on him in his room, kind of like making rounds, ha ha. BUT what about when I’m at work or asleep? He will not come wake me. The thought of a more serious accident or injury occurring without him understanding to call me, or his sister – or 911 depending on the severity – is terrifying. We continue to work on this daily. Responder tip: do not discount a behavior because a “typical person” should know better.
Job Interviews. It’s that time… my children are about to be 16 and 20 in March. They were fortunate enough to get a private part time job briefly last year helping out a lovely lady with some yard work. It was a nice introduction to exchanging hours for cash. It was flexible. The work was hard, but the employer allowed for frequent breaks and many questions. There really isn’t a resource that helps neurotypical people prepare for job interviews, let alone people with autism. When coaching my children for interviews it’s hard to predict some of the non-standard questions that might come up. Some common autism traits include blunt honesty, lack of a conversation filter, and the inability to recognize any kind of sarcasm, idioms, etc. Phrases like “hold your horses” and “killing two birds with one stone” are taken at face value. This makes job interviews a challenge. Answering questions, knowing the right things to say, and abstaining from over sharing are tasks that do not come naturally. It’s another obstacle to overcome. Responder tip: speak slowly and clearly, and only use words that have one meaning if possible.
A Routine Traffic Stop. My children do not drive, as I wrote earlier, but when doing some research I read a story about a young adult that got pulled over for some erratic driving. The officer asked him if he took any drugs. The young man, 23, took his vitamins that day. He knows that you buy vitamins in a drug store; he said yes, he took drugs, meaning his daily vitamins. He was immediately cuffed and taken into custody. The young man did not understand what was happening. It wasn’t until he was able to call his caregiver that the situation was straightened out. Responder tip: you may have to dig a little deeper with routine questions to get the full picture.
Hygiene / Bathroom Issues. There are no parenting books on potty training a man-sized teenager. Yeah, not fun to discuss. My son had a bowel obstruction a few years ago that was traumatic for him. As a result, his body automatically holds it when he has to make a bowel movement. His sensory issues prevent him from feeling the urge to go until it is too late. And it becomes a self-perpetuating cycle to boot – he fears the experience to be painful so he holds it, which causes the experience to be painful. And round and round we go. GI issues are already commonplace with autism, as are food allergies and sensitivities. I have read on many parenting forums that my son’s issue is not unique. So as a responder in the field, you may encounter young adults that have bathroom issues. Responder tip: do not assume anything about the household situation until you get a full clinical picture.
Picky Eating. “Children won’t starve themselves if you serve them food they don’t like.” Ha! Dr. Spock and all the other parenting experts don’t know my daughter. As a toddler she went five full days without eating when I tried to get her to eat a simple meal that was outside of her three acceptable foods. In fourth grade, she went on a camping field trip with her classmates. She was not allowed to bring her own food. I figured that being around her peers, being outside and doing activities, and not having access to her favorite foods would mean she would get over her picky eating. Silly rabbit… she didn’t eat or drink for the entire three-day trip. She is about to turn 20 and eats four foods. And God help us, they must be the right brand! If it’s pizza the crust can’t be thin, it can’t be too cheesy, the pepperoni can’t be the spicy kind… she has the palate of a sommelier. This is commonplace with autism because it’s not just about “kid approved” foods vs. healthy dishes. It’s about routine, sensory issues, texture, food allergies or sensitivities… there’s so much more here than meets the eye. Going out to eat, social gatherings around food… these are routine to us. But it is a source of anxiety for my daughter. I try to let her view the menu online if we are going somewhere. If there is nothing she likes I let her make something herself and bring it. It puts the ownership on her. It is still a struggle for her and it can be awkward in social situations, making her feel yet another reason that she is “too different” to fit in at times.

Adulting is hard as it is! But these are some standard, everyday activities that my children currently struggle with. How about you? What are some of your experiences that didn’t make my list? Or if you can relate to any of these, what things have worked in your household? Be sure to comment below!

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.

7 Tips for Communicating with a Nonverbal Autistic Patient

Posted on April 26, 2017 by SpiritOfAutism

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

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

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

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

Communication on scene

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

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

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

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

Over to you…

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

image courtesy of interacting with autism

Managing Autism Meltdowns Before They Escalate

Posted on November 5, 2016 by SpiritOfAutism

image courtesy of interacting with autism

I’ve spent the last several years teaching emergency responders how to recognize someone as autistic, whether it’s a police matter, medical emergency or search and rescue call. This training has changed the way responders assess and handle situations, ensuring safety for everyone involved. The number one rule, at least in EMS, is that we all go home at the end of the shift.

I also teach emergency preparedness to Autism families to help them be ready for the worst in their community. This training includes what kinds of additional items they should consider putting in their 72-hour kit, how to best accommodate loved ones with autism if the need should arise to go to shelter during a disaster or severe weather, and much more.

Being an emergency responder myself as well as a single mom of two autistic teens, I realized that many of the calls we respond to have already become a crisis because a meltdown of some sort has occurred, and the situation is now escalated to the point where the family can no longer safely intervene. I started wondering how to help families BEFORE meltdowns become a crisis. Before public safety has to be involved.

But first, what exactly is a meltdown?

Basically, it’s what happens when the brain receives WAY too much information – most often sensory input – and cannot process this information in a conventional, organized manner. “Sensory Processing” refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

As an autism parent, I’ve learned over the last 14+ years that when my children are overwhelmed by the sensory triggers in their environment they are immediately thrown into survival mode – it is pure physical and psychological torture for them. Their senses are on fire and they have little control over themselves.

Even for adults with autism, a meltdown feels nothing short of overwhelming, paralyzing and out of control…

It’s like their “browser” has too many tabs open and crashes, only it’s their entire body. Their brain hits Ctrl-Alt-Del automatically, causing fatigue, disorientation and the loss of ability to speak.

And it’s behind nearly all of what everyone else sees as “bad behavior.”

Here is a (credited) video I use in my training, created by Interacting With Autism, illustrating a simple day-to-day sensory meltdown a boy experiences in a coffee shop.

Sensory Overload (Interacting with Autism Project) from Miguel Jiron on Vimeo.

Stressful, right? Now, imagine a disaster or emergency situation – where lights and sirens and a crowd of uniformed people and nosy neighbors are gathered around – and add that in for good measure. It’s beyond chaotic; it’s completely overwhelming.

I started thinking about ways to broaden my reach and help educate autism families about public safety interactions… and then I took it a step further.

What if I could help families manage meltdowns as soon as they start? What if there was a way to calm the nervous system and help someone with autism regain control of their senses before they went all the way down the “rabbit hole?”

I found an amazing tool that does just that. Whether a meltdown is from sensory overload or anxiety that often accompanies autism, this unique method can literally stop a meltdown in its tracks and provide instant relief for the person experiencing it. No, I’m not talking about any type of cure, of course, rather a way to manage a meltdown before it escalates out of control. I’ve been working with families and autistic adults alike and the results have been truly amazing.

If you’re struggling with anxiety attacks and meltdowns, or if you want to help your child overcome debilitating sensory overwhelm, I can truly help. I even use this method on myself when I’m facing a stressful or dangerous 911 call on the job! For all the emergency responders on my mailing list, this may also be a good tool to learn to help calm patients or families on scene, even if it’s a bit unconventional.

For the month of November, as my way of giving thanks for the gifts I have in my life and the relief my children and I have experienced from this priceless technique, I’m offering a complimentary consultation for my next 10 clients. If it feels like a good fit for you or your child, I’m also extending a deeply discounted session rate of just $37.

For me, November is a time of gratitude, reflection and giving back to the community. If this resonates with you, click here to find out more. I’m so excited to work with you!

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.

Trix Are for Kids, Autism is Not (Only)

Posted on August 30, 2015 by SpiritOfAutism

image courtesy of freedigitalphotos.net

When I first began my Autism Training for Emergency Responders journey, my presentation focused heavily on children with autism, as that was my personal experience. This, of course, is well needed, but with 50,000 autistic teens transitioning into adults each year (with very few resources to aid that transition), my teaching has expanded immensely. Especially knowing that people with autism are seven times more likely to interact with emergency responders.

I have two teenagers – 13 and 17 – on the autism spectrum. My daily contemplations and challenges have gone from, “Please stop climbing on that thing, we’re going to get thrown out!” to, “Am I providing enough support to teach you the life skills you need as a young adult?”

Additionally, my 13 year-old is seven inches taller than me, has a mustache, and wears men’s large clothing (when he wears clothing at all). Despite his level of comprehension and response in an emergency situation, his size alone would warrant him being treated like an adult on scene, which has the potential to go downhill very quickly.

In 2000, 1 in 166 children were diagnosed with a form of autism. That figure has been climbing ever since, as we are now looking at 1 in 68 (1 in 42 boys). Here in metro Atlanta, that’s one child on every school bus. 1 in 42 boys will grow up to be 1 in 42 men.

You do not “grow out of” autism. Sure, with the right support and tools you can learn coping skills and methods to help improve your day-to-day living. But autism doesn’t magically go away when you turn 21!

The Centers for Disease Control says that the number of adults living with autism is expected to climb by about 700 percent by 2030. From 1990, when adult stats were first taken, the number of adults being diagnosed with autism has nearly tripled.

This does not even include the number of parents who, after receiving an autism diagnosis for their child, came to the realization that they, too, have autism but were never diagnosed.

Recognizing Adults with Autism On Scene

Emergencies are stressful for everyone! An adult with autism may react in ways that appear odd or threatening to a responder. It can be more challenging to identify on scene, and responders can be caught off guard if someone goes from “having it all together” to a complete autism meltdown in a short amount of time.

Remember, we always treat the patient or victim, not the diagnosis. However, here are a few common traits or behaviors that might help you recognize that your patient or victim has autism.

Body language/facial expression challenges. Neurotypical people often easily express themselves, including verbal and non-verbal methods. Adults with autism have significant challenges when it comes to interpretation and displaying types of non-verbal communication. They have trouble maintaining eye contact, interpreting facial expressions, and using motions and gestures. Remember to use direct words that have only one meaning when communicating so there is less chance for misinterpretation.

Sensory Processing challenges. Individuals with autism have either extreme or inefficient sensitivity when it comes to stimuli. While some autistic adults have learned to cope with sensory issues in their daily routines, an emergency situation will involve a ton of new smells, sounds, input, and sights, and they may be unable to process these sensory details adequately. Remember to reduce sensory triggers if at all possible (e.g., turn off lights and sirens, remove unnecessary personnel).

Empathy challenges. Adults with autism struggle with showing shared sensitivity of feelings with others and have difficulty processing others’ perspectives. On scene, this could present as if someone is “cold” or doesn’t care about the outcome of a family member, or sometimes even themselves.

It is typically taught that people with autism are incapable of employing “theory of mind,” or, in other words, unable to imagine anyone else’s thoughts and feelings. Empathy is more complicated than that. There is cognitive empathy, the ability to read other people’s feelings, but there is also affective empathy, the ability to share other people’s feelings. Just because someone with autism may not have the social/cognitive skill to read someone else’s feelings doesn’t mean they can’t feel someone else’s pain. Do not assume that a person’s inability to interpret nonverbal cues means that they don’t care and lack empathy.

Verbal challenges. Up to 40% of adults with autism never learn to speak. If they are verbal, they may have trouble maintaining a conversation, expressing their needs, or processing thoughts appropriately. Remember to look for or provide alternative communication methods if possible (pen and paper, sign language, smart devices).

Uncommon preoccupations. Many people with autism are extremely knowledgeable about certain topics, such as aviation, engineering, word origins, video games, or old movies. They may demonstrate hyper-focus on a particular area of interest, while showing complete disinterest or inability to follow along with other topics. If you are having trouble completing your patient survey or interview, try to engage the person in the topic they are preoccupied with to start the conversation rolling. Once you have gained rapport, you can gradually “fold in” the questions you need answered.

Routine challenges. Routines and rituals are very important to people with autism. They help to maintain order and predictability in their daily lives. This can be a challenge on scene, as most emergencies are not part of a schedule! You may need to swiftly remove someone from a dangerous situation or separate them from their caregiver depending on the emergency. If the scene is safe, allow them to maintain as much of their routine as possible. When you cannot, take a minute first to explain to the person what is about to happen before you act.

Help Me Illuminate the Future for Those with Autism

Posted on March 24, 2015 by SpiritOfAutism

As you know, I am extremely involved in the Autism community, both to support my son and in the Emergency Preparedness/Emergency Responder arena. I am blessed and honored to be training some of Georgia’s finest men and women in uniform – Law Enforcement, EMS, Fire Rescue and Disaster Responders – on how to recognize and safely interact with Autistic persons on the scene of a crime, fire, medical call or disaster. My goal is to have all of Georgia’s responders trained within the next 18 months. The Autism Society of Georgia is helping me do that by fully endorsing my training programs!

April 2 is World Autism Awareness Day.

Please join the Autism Society of Georgia and me by helping us illuminate the future and create awareness for Autism.

For as little as $5.00 you can help us light a luminary for 1 child or adult.

There are over 150,000 children and adults in Georgia identified with Autism and we are making a difference. And, because my training programs are critical to the safety of the Autism community, the Autism Society of Georgia is giving 20% back to Spirit of Autism when you donate through my unique link so that I can continue to provide this training.

If you feel inspired to, you can click here to go to mydonation page or head over to Autism Society of Georgia’s The Future is Bright website to learn more about the campaign. From there you can choose Spirit of Autism on the right hand side by clicking my logo.

Thank you for being a part of MY community. I know you haven’t heard from me regularly in a while… I apologize! I’m almost done with Advanced EMT school and can come up for air soon : ) Now back to my IV drip conversions and drug calculations!

xoxo

Autism: Our Future Is Bright

Posted on February 3, 2015 by SpiritOfAutism

World Autism Awareness Day is coming soon and I’m SUPER excited to partner with Autism Society Georgia for this amazing campaign.

If you live in Georgia, you can help us spread the message that the Future is Bright for everyone touched by Autism.

For a donation of just $40 you will receive 12 luminary kits (each kit = one container and an LED tea light candle).

On April 2nd, illuminate your streets, parks, schools, churches, businesses and neighborhoods throughout Georgia in celebration of World Autism Awareness Day!

If you go to TheFutureIsBright.org or text “SAFE” to 71777 to make your donation, 10% of the money we raise will go directly to the Spirit of Autism to help us continue to provide Autism training for our first responders and families. Let’s help keep everyone touched by Autism safe and sound and let all of Georgia know that The Future Is Bright!

Please LIKE and SHARE this post so we can light one luminary for every person in Georgia with Autism. For a PDF download to print, click here.

Autism Parenting: Are You Going to the Hardware Store for a Loaf of Bread?

Posted on December 2, 2014 by SpiritOfAutism

There is a really funny skit I remember from my childhood years of watching The Electric Company about sweet rolls. It was a simple conversation between a waitress and a customer:

“A cup of coffee and a sweet roll.”

“We’re out of sweet rolls.”

“Glass of milk and a sweet roll?”

“We are… out of sweet rolls.”

“Iced tea and a sweet roll.”

“We are OUT of sweet ROLLS.”

“Orange juice and a sweet roll?”

“WE ARE OUT OF SWEET ROLLS!!!!”

(silence)

“Okay, then I’ll just have a sweet roll.”

It still makes me giggle, probably because it describes most of the people I interact with daily

Here’s the video if you need a memory jogger:

If you look at it from a different angle, in relation to how your Autistic child processes information, it can lift another veil in understanding and diffusing some of those frustrating moments.

How many times have you had to repeat a command or request to your child for what you perceive to be a simple and obvious task? If your house is like mine, it can sometimes be seven or eight, and then my patience can surpass simmer and go straight to a rolling boil. While it’s true children make you repeat yourself in general, consider that your Autistic child simply and honestly may not understand what you’re asking, nor do they know how to ask for clarification. Many times, if a question or statement isn’t understood by my son he will simply bypass it and move on as if it were a “File Not Found” error that automatically redirected to a new website.

Multiple commands are difficult to process. It took me a while to realize this and stop perceiving my son as being defiant. Asking him to put on his socks and shoes, brush his teeth, and meet me in the car while I pour my morning coffee (the way I would process the morning’s rituals) would result in absolute shutdown. I would most likely finish my tasks, expecting him to be diligently checking off the list I assigned him, and then find him on his Nintendo DS with none of the items completed. Naturally at that point (after a minor litany of loud grumblings), I would also expect him to hurry through the list sharing my sense of urgency, understanding that we were now late.

It never happens that way.

Here’s the deal. He doesn’t process multiple commands. He doesn’t break his ritual or the order things should be done because I am yelling that we’re late. He doesn’t “just know” what comes next without being told. I can tell him we are out of sweet rolls until I’m shouting it, but he will still ask for them. Why? Because at this time, that is how his brain processes information. It is MY EXPECTATIONS of him that are causing the frustrations and meltdowns, not his behavior.

If I continue to repeat myself in these same fashions, doesn’t that mean I’m expecting him to do something he’s not capable of? Wouldn’t that be the same as going into a hardware store and asking for a loaf of bread? Would I keep asking the cashier over and over for bread, raising my voice and getting frustrated, or would I eventually figure out that I have to go to a different store to get what I need?

I learned the hard way that I can’t get mad at my child when I am expecting something from him based on the way I operate and think. Something he simply isn’t capable of. Boy do I love the mornings so much more now that I am looking for bread in the right store, and so does he!

BONUS tips for the morning:

Single commands (Put your socks on. Good. Now go brush your teeth. Great job!)
Predictable routines
Visual cues hanging in a central location that you can refer to
Laying out items the night before
Saving TV or games until after tasks are completed (still working on this one!)
Allowing extra time for zippers, buttons, etc.
Having races to see who finishes some of the tasks first
Using a timer – making it a fun game
Lots of positive reinforcement!

How often do your expectations cause communication breakdown with your child? Share your thoughts by commenting below!

Spirit of Autism Web TV Episode 3 – Sensory Processing Issues

Posted on September 21, 2014 by SpiritOfAutism

On the last episode of Spirit of Autism TV, I had planned on presenting a fantastic interview with Elisa from Adventure to Fitness, but the technology gods were not shining down upon me favorably that week Look for that coming in October – you’re going to love it!

My good friend and teaching partner Austin agreed to come in and save my bacon at the last minute and we talked about just how much sensory processing issues affect people with Autism in their day to day lives, and provided some great tips for coping! Tune in to the replay below:

What are some of your favorite ways to help your child deal with sensory overwhelm? Share by commenting below!

Spirit of Autism, LLC

Autism Training for Emergency Responders • Emergency Preparedness

Category Archives: Autism Support