far from heaven

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

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

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

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

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

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

What is “High Functioning Autism?”

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

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

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

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

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

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

***

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

autism and violence

Autism Tips for Emergency Responders: Autism and Violence

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

Are autistic people more prone to violence?

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

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

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

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

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

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

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

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

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

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

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

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

What to do when encountering violent behavior and autism is suspected

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

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

 

autism no eye contact

Autism Tips for Emergency Responders: No Eye Contact

autism no eye contact

image courtesy of freedigitalphotos.net

I read an awesome article on TheMighty.com that asked 16 different people on the autism spectrum to describe why making eye contact can be difficult for them. Any insights like this help me be a better parent to my autistic teens and a better educator for emergency responders.

Lack of eye contact may be considered rude or antisocial to those who don’t understand it. However, in an emergency situation that involves first responders, it can be misconstrued as evidence of guilt, non-compliance, or even altered mental status, all of which can put an emergency responder on the defensive and potentially lead to a call going downhill fast.

The Mighty asked their readers with autism who find eye contact difficult to share a description of what it’s like for them. I think some of these quotes are really helpful for emergency responders to be able to understand and identify what’s really going on when someone with autism cannot look at them. The full article can be found here, but some of my favorite descriptions are:

“It’s abstract to me and can be draining. Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded. It can disrupt any thought or speaking process I have going on and zaps my energy quickly.” — Laura Spoerl

“To me, eye contact feels like I’m being stared at, like I’m being scrutinized and judged. It makes me uncomfortable because I feel like I’m under immense pressure, and the tension builds and builds until finally I have to look away. It feels almost confrontational, which causes me a lot of anxiety.”— Emma Wozny

“It can feel like you’re standing there naked. It’s very difficult to form a coherent thought with all of this going on in your head. ” — Megan Klein

“When I make eye contact, the world around me blocks out. I can only process the immense pain and discomfort that comes to my brain. This pain goes if I look away.” — Lucy Clapham

“For me it can be a physical pain; it feels like burning with too many emotions, and I just can’t take it in all at once.” — Rosie Howard

“There’s plenty enough for us to concentrate on mid-conversation without the demand to do something which, quite frankly, feels very unnatural to many of us. You can have my eye contact, or you can have my concentration. Choose whichever one you value more.”– Chris Bonnello, from Autistic Not Weird

“Eye contact is hard for me because I am easily overwhelmed by lots of different input. When I am trying to listen, follow, or contribute to a conversation or just manage all my different sensitivities, it is easiest, most comfortable and least painful for me to not make eye contact. I listen and focus better when I am not making eye contact.” — Erin McKinney

My co-trainer at Spirit of Autism, Austin Harris, told me what it’s like for him, and how he’s learned to manage it:

“Eye contact is difficult for me because it makes me very nervous when I’m being looked at directly. It makes me feel uncomfortable in an unexplainable way. One tool I use to combat this is quick contact by looking at multiple people and objects. This works especially well for public speaking and teaching where you need to talk to the group instead of one person. What I do is I make brief contact every so often with different individuals so I am not focusing on just one person’s eyes.”

My daughter shared this with me about her experience:

“If I’m coming up on a person about to pass me, I drop my gaze immediately. If I happen to accidentally lock eyes with them, I feel a tinge of panic. What are they thinking? Are they thinking about me at all? Did I rub them the wrong way? I’d rather be invisible to them, and chances are likely that they thought nothing of it, but I remember it.

There’s something very uncomfortable about looking directly into somebody’s eyes while they’re staring at you. I don’t know what’s going on and I’m trying to evaluate the situation. And how long are you supposed to keep eye contact, anyway? If it’s too short, it may come across as dismissive; if it’s too long, it’s way too awkward. It’s a lot of processing and confusion that goes on underneath the surface in a matter of seconds, and when there are responses and replies expected of you on top of that, it gets to be overwhelming sometimes.”

I think the biggest takeaways for emergency responders when it comes to lack of eye contact are:

  1. If someone with autism isn’t looking at you directly it does not mean they aren’t listening.
  2. It can be physically painful for an autistic person to maintain eye contact with you.
  3. A person with autism may need to avoid eye contact in order to process and focus on what you’re saying to them.

Rather than demanding that someone look at you when you are speaking, it may be helpful to simply ask a person that’s not keeping eye contact with you if they are listening, if they understand you, if they can repeat back what you just said, or even if they’d prefer to communicate by writing.

image courtesy of freedigitalphotos.net

Autism Tips for Emergency Responders: Adult Meltdowns

image courtesy of freedigitalphotos.net

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!

 

image courtesy of freedigitalphotos.net

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

image courtesy of freedigitalphotos.net

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 13th!), 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.

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

5 Ways Autism Skills Can Help Emergency Responders On Scene

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

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!

image courtesy of freedigitalphotos.net

Autism Tips for Emergency Responders: Autism and Violence

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

My extended family doesn’t know a great deal about autism. My children and I don’t live near my mother or stepmother, and autism wasn’t even on my radar when my father passed away in 2001. The majority of information they receive about autism is what they hear in the news and any personal stories I choose to share about day to day living as a single mom with two autistic teens.

A family member recently asked me, “How bad is Justin?”

“What do you mean?” I replied.

“I saw on the news that a boy with autism got angry and bit his grandmother’s finger off. Is he violent like that? I’m worried.”

Officers frequently ask during my autism trainings if people with autism are more likely to abuse alcohol and drugs and commit violent crimes.

These are all great questions; however thanks to the media an already grossly misunderstood community is now feared and shunned as one being predisposed for violence, and even murder. Case in point, the Sandy Hook School shooting in 2012, the 20-year old shooter was diagnosed with Asperger’s Syndrome at age 13.

Did autism cause him to fatally shoot 20 children and 6 adult staff members?

No, it did not.

According to an article from Interactive Autism Network at Kennedy Krieger Institute,

“People with autism spectrum disorder (ASD) may have characteristics that could make them both more likely, and less likely, to break the law. On the one hand, they may have trouble with aggression, controlling strong emotions, and understanding other people’s perspectives. They may have challenging behaviors that could attract police attention. However, they also tend to find rules helpful, and laws are “simply social rules of a particular type” that they could be expected to follow.”

There are few case studies dealing with high-functioning autism and crime, and those in place are already biased, as the subjects studied were already in prison or a forensic hospital – they already had legal troubles. This indeed elicits a “chicken or the egg” argument, and cannot truly answer whether or not autism is a factor in violence and crimes. Studies would need to consider people throughout a community, not just those in jails, psychiatric hospitals or institutions.

It is my personal experience that most people with autism are good-natured, happy individuals that are focused on the “now” and typically like to follow rules, but are also wired to be who they are, unapologetically. There is no known evidence that autism causes violent criminal behavior.

Victims, Not Aggressors

 

The more likely scenario you will encounter? People with autism tend to be victims of crimes. Children with disabilities are about three times more likely to be the victims of abuse or neglect, and children with autism are bullied more often than other children.

Social and communication deficits may also place people with autism at a disadvantage when questioned by police. They may not be able to tell if an investigator is lying or manipulating them, resulting in potentially making a false confession. Officers that are not trained to recognize autism may also interpret lack of eye contact, vague answers are changing the subject as evidence of guilt, but these are typical autistic behaviors.

Impulses and Behavior Response

 

Autism Speaks also tells us that autism itself does not cause challenging behaviors. It is likely, however, that some of the underlying biological processes that result in autism might also result in behaviors that are outside of a person’s control—similar to how the tremors associated with Parkinson’s Disease are brought on by impulses that the person cannot direct. In addition, some behavioral responses are simply reflexes—no more of a choice than when your leg jerks upward when the doctor uses his hammer on your kneecap.

Autism aggression is less likely to result in violent behavior toward others; most often the automatic response to stressors (like emergencies) are repetitive or ritualistic – and sometimes self-injurious – behaviors that serve the purpose of self-calming.

2014-12-28 13.37.32

How My Son Leveled Up in New York

2014-12-28 13.37.32Happy New Year! A week ago we successfully and smoothly returned from a week in New York and New Jersey. Somehow we survived the 15-hour drive (no stops other than to gas up and stretch) each way with grace. And without killing each other.

So what do you get when you combine a single mom, a rental car, two special needs teens, a long-ass drive and a week of new experiences?

PROGRESS! That’s right, my (not so) little man leveled up in innumerable ways. This was my true Christmas gift and I am beyond astounded and grateful. Here are some of the awesome discoveries and moments of progress that occurred:

 An Eye for Beauty

Our initial journey took us from Atlanta to New Jersey via I-77 and I-81. We were2014-12-28 13.35.27 in the middle of Virginia at the PERFECT time of day and saw the most pristine and beautiful skies. I had never before heard my son describe things that were beautiful to him – I wasn’t even aware that he had an eye for such things. Not only could he not stop talking about the views and the heavenly cloud formations, but he took more than 200 photos with his iPhone! This interest grew exponentially as we traveled over various bridges from New Jersey into New York throughout our vacation. He captured scenes from a really unique perspective… perhaps a higher resolution camera is in his near future!

Embracing His Goofiness

J-Bird developed another related camera skill during this time – taking unflattering selfies. He made some of the strangest faces and proceeded to take selfies and assign ridiculously appropriate and hilarious hashtags to accompany them. And they say people with Autism have no sense of humor. Incorrect. It was glorious to see him be unapologetically himself and make others genuinely laugh in the process.

Independence Day

This may seem like no big deal to many, but any little steps toward independence are celebrated heartily in our house (or hotel room, in this case). Perhaps it was the new surroundings that encouraged him, but for the first time my son was able to wash his own hair in the shower. This success seemed to feed his confidence and he began dressing himself as well! It can be so challenging as parents to watch our gifted children perform amazing and independent feats in other areas, such as computer programming, yet struggle with daily hygiene tasks. This was huge.

New Communication

The morning of our hotel check out, my son and I went down to the hotel restaurant for breakfast, as we did most mornings. However, on this day it was downright MOBBED. It was New Year’s Day and there was a huge Asian tour group there as well as in influx of new guests from the night before. People were swarming around like bees, many of the menu items he had grown accustomed to were sold out, and it was LOUD. I repeatedly asked him to grab a pl2014-12-28 08.21.18ate from the food bar so I could try and get the last two pieces of bread for him to toast and he wasn’t moving. Instead of his normal response to such an overwhelming environment (verbal stimming, complete shutdown, crashing into me, etc.) he simply looked at me and said, “I feel really uncomfortable around all these people.” WHAT? Who was this well-spoken young man before me? I was SO proud of him. I immediately told him that I understood and ushered him to a table. I plugged his headphones into his iPhone and told him to watch a video while I navigated around the food area and got him what he needed.

Why So Many Level Ups?

This is all great news for us, and I’m sure you can relate to some of them or have hope for similar types of progress in your home. But it wouldn’t be fair to just share our success… here’s what I think led up to them:

Time Away

This was our first family vacation in many, many years. Since we acquired our2014-12-27 16.02.10 copy huskies. It was long overdue. Taking time away from the “chiseled in stone” daily rituals can sometimes provide a boost in new perspectives and abilities. I’m so glad I created this opportunity for us to get away. Keep in mind, though, that we quickly established some new routines while we were there, so it’s not like we went from the daily grind to complete spontaneity. Little things like going downstairs for breakfast together helped him stay focused and feel safe. The one morning I took the kids to the diner instead of just him and I having our normal breakfast created some real problems for him, so I had to really ascertain from his body language what should be routine and what can be free and spontaneous activity. Which leads us right into the next one…

Listening

I acknowledged that our quaint breakfast together was important to him each morning, so we went back to that for his sake. I was constantly watching for cues when it came to what he could handle and when he had enough of something. In one situation, he was in full meltdown mode and we were not in a place where we could leave, so I had to adapt and overcome! I created a small, quiet corner for him in the museum store and let the girls go off on their own for a bit while I stayed with him. These little things helped him feel heard and understood, and that made it easier for everyone.

Being Prepared and Being Flexible

I tried to think of all possible scenarios and issues when it came to planning this trip. I even planned to NOT plan some days so we could survey everyone’s mood and not be locked into an itinerary of sorts. So of course it was great for me to have familiar attachment items with us – even when he said he didn’t want to bring them – as well as many of the tools I mentioned in previous posts for travel. But some things just turn out differently no matter how much planning goes into it. For instance, I bought a travel charger for my laptop and brought several DVDs for him to watch in the car during our drive. Guess what. He wanted to watch live streams on YouTube. It’s a good thing I found out what he was doing when I did, because I had to call our wireless provider and purchase a wildly larger data plan so we didn’t have overage penalties!! But this kept him occupied when he wasn’t taking selfies and scenery photos. On the flip side, he didn’t want to bring his Mario plush but I ran back in the house and grabbed it at the last minute. This item was by far the most used throughout the entire week.

Encouragement

When I learned of his new photography skills I encouraged and complimented him. And they were really good, too! Sure, it was a bit much to get shown each of the 200+ photos every time he snapped one. Many of them were extremely similar. But I looked at them all and found something unique to say about each one. I also encouraged his independence but did not push him into something he was not ready to do or uncomfortable with.

As a result of these decisions or actions on my part, my son achieved some awesome new skills… something we may never have discovered if we didn’t take a crazy drive to New York.

Over to You…

In what ways can you shake up your routine a bit and see how your child responds? You just might be surprised at what’s possible with a little preparedness, flexibility, listening and encouragement!

 

spirit of autism loaf of bread

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

spirit of autism loaf of breadThere 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!