Growing up there was nothing I wanted more in this world than for people to see me for exactly who I am, and like me for it. I drive myself mad looking for this, because identity is unstable. People change as they get older through a combination of experience, genetic predispositions, and neuroplasticity. Aspergers is one fickle diagnoses, mainly because it is susceptible to all kinds of misinterpretation.
And then this miraculous invention called Facebook came out.
I joined Facebook in 2006 when it was still a relatively small community. One thing I loved about Facebook is that the social norms were different from in-person interaction, and often times made things easier on me. I can connect with people and not be criticized for my lack of eye contact or vocal tone.
I can filter my blunt comments, and assess my honesty before I say anything. Additionally, I can access hundreds of people within minutes who share my obscure interests, like Russian history or Phantom of the Opera. I think some of the first groups I joined were “addicted to piano,” and “when I was your age Pluto was a planet.” I had lived in 3 states and 2 countries at that point, and I could keep in touch with all of my friends from around the world.
Nowadays it seems like everyone I know is on Facebook and as a result, I have to keep my freak flag on a leash. Both of my grandmas are now on Facebook, and one of them said to me: “You better watch what you post because it might come back to bite you.”
What does that even mean? Do you even know how to use Facebook grandma? Turns out she did and also learned how to use an iPad way before I’d even seen one. To give you an idea of some of the posts my grandma was referring to, here is an example:
Dear girl who cheated off my exam today,
You’re a jerk.
Unfortunately for you, So am I. I put all the wrong answers in for you to copy and waited until you left to put the right ones in. It’s called studying.
Your passive aggressive classmate, Alix
I think social media’s impact on how we incorporate technology in our daily lives can condition us to display Asperger-type symptoms, the kind that my social skills training and family taught me not to do. Growing up my mom taught me to never use my cell phone at the table. To this day I never pull out my cell phone at a nice restaurant, even when asked to. Now when my friends and I go out, one is Instagramming their cocktail, the other answering a text from her husband, etc.
I don’t meet very many people my age who impress me with their ability to hold down a sincere conversation. I went to a youth group activity that was a meet and greet for young adults. I knew absolutely no one. I turned to this guy next to me and asked casually “What’s your name?”. He responded with one word “Martin,” and didn’t even look me in the eye, but instead was looking down at his phone where he had Facebook open.
I was talking to a CEO who runs a prominent company, he told me that when he hires graduates he looks for people who can look him in the eye, shake his hand, and carry on a conversation on top of meeting a few of the skills that would contribute to his company (e.g. using a computer program, or proficiency in Spanish, etc). He looks for people who have complex analytical skills or specialize in mastering one area. He could care less about the transcripts or grade point average of our degree.
There is hope for us with autism and there is a reason we should constantly strive to improve our social skills on top of pursuing our interests, because there are people who appreciate us for who we are and what we have. But in order to bridge that gap, we must have those social skills, even if Facebook and other social media is degrading the quality of interactions we have with people in person.
The holiday season is a time of friends, family, parties, food, and gifts. It is also a time of tight schedules, inter-personal drama, and occasional overspending. Yes, we all know that holiday cheer comes with its typical share of stressors, but adults with autism spectrum disorders may face a completely different set of challenges than you might expect. Specific sensory needs, unexpected social demands, and changes in routine may be overwhelming to an autistic individual during this time. As friends and families of adults with autism, we can do our part to ease these stresses and help them better cope with all of the holiday parties and family gatherings. Madison House asked advisory board member and self-advocate, Jeffrey Deutsch, Ph.D., to comment on what the public should know about autism and the holiday season. Together, we’ve come up with a list of suggestions that we hope you and your friends find helpful.
1. If you’ve met one Autistic person, you’ve met one autistic person
These sensory issues can also be directly relevant in the holiday setting. For example, a person on the spectrum might be reluctant to wear certain clothing garments or eat certain foods that are considered important for the season. In being mindful of these sensitivities, gift buying for someone with autism can be a little more challenging. When purchasing a gift for a someone on the spectrum, consider asking the individual directly what he would like, if he has any special interests, etc. If you are still unsure as to what to buy, Visa gift cards can be used anywhere Visa debit cards are accepted. This is a great option if you’d like the recipient to be able to purchase his or her own gift with flexibility similar to cash.
2. The Right to “Alone Time”
Many people on the autism spectrum are introverted. It is important to remember, especially during the holidays, that things can get overwhelming, and we all value the opportunity to duck out, go off to another room, or take a moment outside and be alone. Those who are socially oriented should take note that not everyone shares their desire for company, and even those who do may not feel like chatting at a given moment. Even with the best intentions, insisting on trying to talk to someone who has asked to be left alone or reprimanding them for being “unfriendly” may be perceived as a form of harassment. A good rule of thumb: People define “personal space” differently. Try not to apply your own definition to the person standing next to you.
3. Practice Tolerance
Be tolerant of certain behaviors even if you don’t ultimately accept them as appropriate. This means that it is okay to insist on certain standards of decorum, such as politeness. However, an individual deviating from socially acceptable norms does not necessarily indicate rudeness. It is okay to correct inappropriate behaviors, but try not to get upset at the person because his intentions might be well-meaning. Pulling the person aside privately and teaching acceptable behavior is one good way to approach this scenario.
4. Plan in Advance
People with autism have a tendency to be at their best when they know of plans in advance and when those plans are adhered to within reason. Changing plans midstream places undue challenges in a variety of different areas. Make a conscious effort to explain to our autistic loved ones how a future event will ensue as it could alleviate a stressful situation later. Dr. Deutsch provided a hypothetical scenario to explain how one with autism might experience a change in plans:
“If you first say, ‘We’ll go to Grandma’s on Thanksgiving 5-8pm’, and then, the day before Thanksgiving, say, ‘Actually, instead of going to Grandma’s house, we’ll all go to Outback Steakhouse from 7 till close,’ we may get cranky. We might have visualized our Thanksgiving in advance: first, doing whatever we do at home until it’s time to leave, then being at Grandma’s house in a familiar atmosphere (including only being around people we’ve at least met before), and then going home to watch a movie before going to bed. Now, we have to change that visualization to doing chores for a couple of hours at home, going out to what may be an unfamiliar restaurant packed with definitely unfamiliar people — who may or may not take our stimming or other habits in stride — and afterwards having to go straight to bed due to the late hour. That change may not give us time to mentally prepare.”
5. Dietary Restrictions
Many people with autism are on special diets in which they cannot consume certain ingredients such as gluten or casein. Just as you would provide options for your vegetarian friends, there is a need to make provisions for these guests. If you know that someone with autism will be attending your holiday event, ask if the individual has dietary restrictions. This way, you can prepare suitable meal options for that person and everyone can be included in the festivities.
1. How many times a day, a week do you find yourself with a big old stressful decision?
2. How many of those decisions are simple and completely straight forward?
3. How many times does it feel like you’re saddled with two crappy choices?
The human brain is fascinating and capable of many feats! It’s also prone to getting stuck. When making decisions, one of those sticking points is the Either Or Trap. You know what I mean, EITHER you do this OR that. Here’s why this is oh so common: your brain gets fixated on your habits of perception – the way you see life, people, situations, and then shuts down to any other options. It’s as if there really are only these two options. This is problematic because you literally can’t see other possibilities so you most likely aren’t going to seek out more solutions and people with opposing perceptions. You then make EITHER this decision OR that decision.
This can feel oddly good at times, like any habit can, yet you
also know the sweet freedom that comes from breaking a bad habit.
can you avoid the Either Or Trap?
Acknowledge the tendency for the TRAP
Ask what if these didn’t work…what else…
Seek out people who think differently than you
Set a timer – mind dump as many possibilities as you can
Ask what you really want to see – as in wouldn’t it be
can absolutely expand your perception. This expansion cultivates more options
that are actually connected to your purpose. You then have the freedom to
look at an example to see it in action…
child doesn’t like trying new things – change can be tricky for them because it’s
such an unknown. Unknown has been code for it’s scary and must be avoided. Yet,
you know it would be helpful for them to expand their repertoire. And
They don’t wanna so they yell, argue, heavily complain, and shut down.
to think it’s not worth all this extreme hassle and pressure so you let it go…
that, may come it’s all on them – go do what they want to do – fine, whatever.
think they have to learn sometime so come hell or high water now is the
that, may come it’s all on them – sink or swim, baby.
often comes down to extremes.
Either Or Trap is all about two extremes.
if there were other options? I assure you there are…
just that in the heat of the moment with your pattern of survival it’s hard to
see – literally your brain has defaulted where you can’t see beyond the two
look at expanding perception…
what’s blocking the new experience attempt – what is IT (anxiety,
the specifics – get to the root of fear with AND what else – not
parameters – what will the attempt look like, how long, and debrief plan
Let’s look at potential options…
out your calendar together – what are the daily, weekly tasks and activities?
much calendar time builds the skills and attitude you actually want?
do you actually want for them? for you? for siblings? for whole
topics and situations they know nothing or very little about.
a topic or situation to experience for a set period of time – experiment.
Clarity of focus about what you actually
desire breeds connection with what you actually want to do.
All the doing and trying without connection keeps a cycle of doing and trying.
This breeds fatigue, frustration, and eventually forget-it-ness.
Perhaps most relevant to a student in the classroom: when you are stressed you are less likely to embrace difficult tasks. On your most stressful day, you will probably put the complex tax form in the “to do” box and leave it for a better day.
For our students, neurological stress can be the major underlying factor contributing to difficulties in communication, socialization, and academic performance.
Because of this, it is our essential job as parents and educators to respect the neurological differences and decrease that stress in creative and varied ways.
From breathing techniques to visual strategies and beyond, we will strive to decrease neurological stress so that our students and children can present their best self each and every day.
A schedule is a core strategy that creates an anchor for students who struggle to make sense of their day and their environment.
This is true of any classroom for any type of student. It has been well documented that learners benefit from having a daily agenda. Except, the difference is that while all students benefit from a daily agenda or schedule, students with Asperger’s Syndrome and other special needs have a greater need for this simple, yet fundamental strategy.
For a younger student, this might be a simple posting of the daily activities on the board. For an older student that transitions from classroom to classroom, the daily schedule might be best in a notebook. However, each class period or subject should post the specific activities for that day.
For example, a high school teacher can help to decrease the many stressors of high school life by posting something as simple as:
Although we have addressed the topic of meltdowns previously, it is a topic that needs to be revisited often, given the intense nature of the meltdown. “People with autism, new research suggests, may have an unusually large and overactive amygdala. This may be one reason why people with autism are easily overstimulated and have a hard time understanding and managing emotions.” – University of Washington
This is one of many neurological findings that helps to explain how meltdowns are very different from tantrums. They originate from a neurological place of sensory differences: an over-abundance of neuronal pathways. The brain, whether through too much sensory input, cascading thoughts, chemical overload or some cumulative effect of all of these, gets overwhelmed!
I know individuals with autism can help understand the horror of the meltdown better than any observer. So I would like to refer to Carly Fleischmann for her unique perspective. The following is an excerpt from her website:
The fact that special interests can serve as calming mechanisms is largely true for neuro-typical persons as well. Think of your favorite interests outside of your job and your family.
What do you enjoy doing when left to your own devices? Some common interests include the following:
Whatever your interest[s] might be, you probably find them enjoyable, fulfilling, and even relaxing. The interesting thing about interests is that one person’s most favorite activity/thing might be another person’s least favorite thing to do.
Shopping might be a relaxing and enjoyable activity for someone as they comb through racks and racks until they find that crazy deal of all deals! That very same experience might cause stress and even heart palpitations for another as they search for the nearest exit. As with most strategies, interests are highly individualized.
For persons with Aspergers, interests may take many forms and be especially intense.
Sign Up Here For November 21st Webinar sharing all components of this trail-blazing initiative. Oh…it’s free!
Register Online Now for the Texas Driving with Autism Webinar! The Driving with Autism initiative is a first-of-its-kind program out of Texas that is improving interactions between law enforcement and drivers diagnosed with a communication challenge. Now we want to share the entire initiative with other states, law enforcement agencies and organizations who desire to duplicate the successful program. The One-Hour webinar will be hosted by Ron Lucey, the Executive Director of the Texas Governors Committee on People with Disabilities. Join Jennifer Allen, Executive Director of Aspergers101 and the force behind the initiative, Jeremiah Kuntz, Director of Vehicle Titles & Registration of the Texas Department of Motor Vehicles, and Skylor Hearn, Lieutenant Colonel of the Department of Public Safety as they cover the development and details of the program. Templates, videos and downloadables will be provided. There is no cost. A Q&A will follow the presentation.
1) “Communication Impediment” on State Driver’s License and ID: Offering this restriction code on Texas Driver License and State ID’s cover many diagnosis including Autism and the Deaf community. We will discuss all the diagnosis, the internal process and how to effectively market this message statewide via TV, radio and within every DPS Driver License Office. Templates included 2) Texas Law Enforcement Training: We will go over training materials and how Texas is reaching all it’s law enforcement agencies regarding understanding those with a communication challenge during a traffic stop. Also discussed will be overview of a medical study (poster) published on the effectiveness of the training on mental disorders with Texas State Troopers and what the findings mean to law enforcement agencies. 3) New Option for Disclosure in State Law Enforcement Telecommunication System: With the recent passage of the Samuel Allen Law, Texas drivers now have the option to place “Communication Impediment” in the Texas Law Enforcement Communication System (TLETS), which will alert officers prior to approaching the vehicle during a traffic stop. What does this mean for both officers and drivers and how did we pass legislation. Bonus: Texas Driving with Autism Camp – Aspergers101 teamed up with Texas DPS Training Facility in Florence Texas to develop and offer it’s citizens a “Driving with Autism” Camp. This unique day long camp offers a one-to-one participant to trooper ratio, allowing participants hands-on experience with a law enforcement pull-over situation with no cost to the family or participant. We will share it components with you!
When: Thursday, November 21, 2019 at 10a – 11a (CST)
While growing up as the sibling of someone with autism may progress without a hitch, many harbor feelings of loneliness and resentment. As someone who falls somewhere in-between the above examples, I offer you my son, Charlie Allen. Not until the writing of this blog has Charlie, our youngest, granted me my long desire to write about him. He is the sibling, the brother to Samuel Allen that few, outside our family’s personal circle, know much about.
Charlie was born in 1997, the younger brother to our firstborn Sam. We had no knowledge of Sam’s Autism at this time so the years for early development were probably typical. Contrast to Sam’s quiet world, Charlie had a robust laugh and twinkle in his eye that set the stage to delight anyone in his presence.
I would rather be closer to my brother with autism than close to fake friends who isolate because of autism. Early on, I knew that wasn’t kind nor the way I wanted to be.
Everything changed when Sam began school.
It took four years to diagnose Sam’s autism. Meanwhile Charlie felt the residuals of the strain our family was going through. The dynamics changed and we, as a family, had a multitude of adjustments to make. Not easy on a child so very young. It was a blessing and relief when my husband and I decided I would leave my career to stay home, and since Sam had already started school, it gave alone time for just me and Charlie. We were given the privilege of time, those years were bonding and now I believe instrumental in Charlie’s foundation….and boy did he need one!
By the time Charlie began Kinder, his brother had already made his mark at the public school system where they would ultimately graduate from. Charlie’s quiet yet humorous nature began to emerge. My parents, both now deceased, were his biggest fans/supporters and gave both our sons their time and support that were monumental to both their development. But the Middle school years and beyond became difficult for Charlie. He had developed his own challenges such as fine and gross motor skills (penmanship, tying shoes) that made sports or P.E. painful. His sensory issues where far greater than that of his brothers. Smells, touch and even sight were greatly affected and had to be diagnosed and adjustments that his peers simply didn’t have to think about. The most challenging for Charlie was peer relations. Charlie had a choice, he could choose to play with the 5 or 6 other children in our neighborhood or his brother. This was forced upon him as the others told him so. Calling his brother retarded and refusing to include (actually running from them) Sam in any activity tested Charlie’s resolve early on. Charlie chose Sam. For that, he paid the price but learned to walk alone. We watched as Charlie began to befriend those with disabilities or outcasts as if a shield to protect the person. This is the quiet yet powerful strength of Charlie.
I think Charlie found music as his escape. For him, this has been his release…first of anger (hard rock days) and then various genres that lighten paralleling his life. His Dad plays guitar as did his Do-Dad (grand-father) and he delighted in playing with both! This gave Charlie an audience. Too shy to play in large groups, Charlie has thrilled at smaller gatherings. He can master any rock song on his electric or delight country fans with a spot-on Johnny Cash! He can’t read music but can replicate any song after hearing it. For fun he occasionally plays the banjo and even Jerry Lee on piano. He is gifted!
My husband is a great father. This has been instrumental in both our sons development. Herb has a quiet strength and his skill as a carpenter offered Charlie an alternative to occupy weekends. Together, Herb, Sam and Charlie built a house together on a plot of land in the country. They learned teamwork and the value of hard work in a different way than typical high school sports. It worked. Together they enjoyed starry nights, bonfires and raising the walls of what their hands had built. Finding something you can do together (not everyone is a carpenter) is instrumental. Occupy their time when no one else will.
Becoming His Own Man
Today, Charlie is 22 years old. He has overcome the shadows and quietly stepped into manhood. He works for H-E-B and looks forward to growing with a company that serves. He is kind, Godly and delights in his brother’s company. He notices those who are outcasts and aids them quietly. He stands firm and doesn’t tolerate bullies, rightfully so. To end (and I’m a proud Mom so I could go on and on) this blog I would like to share an unexpected outcome that brings unexpected joy. Less than a year ago, one of those neighborhood childhood bullies approached Charlie and asked for about an hour of his time. Charlie accepted and they met. He asked Charlie for forgiveness for what he and his family had perpetrated on ours. Especially on Charlie as he took the unpopular path of defending his brother. It made an impression. Quite an impression. Charlie forgave and today they meet on occasion and have become friends. This is why I wanted so badly to tell the story of our Charlie. He allowed me permission (for the first time) so I jumped on it!
Charlie has helped me in so many ways. He has stood up for me many times during the middle school years when bullies were rampant. In addition, he has taught me to project that same kindness for the underdog. He is an excellent brother and I couldn’t ask for a better sibling.
Below is a Q & A with Charlie and after that, we offer you expert advice, several resources and checklists for your journey as the”sibling”.
Q & A with Charlie
How does feel to have a brother with Autism? It doesn’t feel any different than having a neurotypical brother. I don’t know any other way. I see Sam as my brother period.
What have been the challenges as you went through school age years together? Isolation from peers mainly. I was known as “the brother of the ‘weird/different one”. One example: in our neighborhood when other kids were outside playing, they would say I couldn’t play with them because my brother was retarded. That hurt. While it hurt, it made me become closer to my brother. I would rather be closer to my brother with autism than close to fake friends who isolate because of autism. Early on, I knew that wasn’t kind nor the way I wanted to be.
How did you handle the isolation? I turned to music. Specifically guitar. First it was electric. I let my emotions out on the electric guitar. Early on, I had anger due to my brothers bullies so I played hard rock music. Think Ozzy Osborne’s guitarist Randy Rhoads. Later, I found a love of acoustic guitar and became inspired by the music of Johnny Cash. The music truly helped me cope with the isolation from my peers, now I just enjoy playing.
Join Aspergers101 on Facebook for Livestream Series
There are many services available to help children with AS develop their skills and become more successful. Social skill groups, pragmatic speech and language therapy, occupational therapy, and special education services may all play a role in meeting the needs of your child. Guest speaker, Dr. Louise O’Donnell from UT Health Science Center, shares valuable insights into the autistic brain and offer solutions at every stage of a persons life when challenged with social integration. Host(s) Jennifer and Samuel Allen (Aspergers101) discuss effective strategies to teach social skills and address behavior are as varied and diverse as the unique individuals who make up the AS population and lead a panel of experts into the topic at programs end. (pre-recorded/runtime 1:31:00)
There are no fee(s) to join us…see you on Aspergers101 Facebook tonight at 7p! (CST)
With all the spooky costumes, scary decorations, eerie noises, and sugary candy, Halloween can be a pretty overwhelming day and night for a child with autism.
The challenges that may arise for children with autism spectrum disorders (ASD) may seem obvious on the surface but if this is your first Halloween, there are some precautions you may take to keep the fear to a minimum and actually have some fun!
Halloween can be a great source of fun for kids, but there’s also no need to push it. Have your child join in, but only if she wants to. If any of the celebrations are not something you both enjoy, don’t feel obligated to participate.
Remember, the diagnosis of Autism does not mean your child cannot participate in Halloween, just take some extra time monitoring the stimuli.
Below are some pointers to make your Halloween a less stressful time for everyone.
Let your child practice wearing their costume at home. This gives you time to make any last minute modifications and time for your child to get used to it. If your child refuses to wear any costume, consider letting them trick or treat in pajamas or regular clothing.
Know your child’s limits and do only what he or she can handle. For example, if your child is not comfortable trick-or-treating, you can start by going to three houses. Assess how your child is doing and build up to more houses the following year.
Create a visual schedule. This might include a map of where you will go.
Practice trick or treating in a familiar environment. Visit friends and family, if possible, even neighbors.
Partner with family and friends that your child likes. A sibling keeps them with the younger crowd but is familiar.
Use role play to practice receiving and giving treats.
If your child has difficulty with change, you may want to decorate your home gradually, especially with sensory issues. Be cognizant of over stimuli (bright flashing lights) and smells (candles).
If you are giving out candy at your home, give your child the option to give a piece of candy. During the day, practice greeting people and giving out candy.
If your child is afraid of going out at night, plan indoor or daytime Halloween activities.
Remember, Halloween looks different for every child on the spectrum and you know your child best. Use your intuition and if you only make it to three houses, that’s okay!
Finally, be aware that Halloween celebrations may be LOUD and painful for those with sensory issues. Either bring headsets to buffer the sounds or remove your child from the heart of the noise. Preparation and planning can help you stay stress-free and keep Halloween a time of much fun instead of true horror!