Aspergers101 blogger, Alix Generous, is an amazing young woman who happens to be diagnosed with Asperger’s Syndrome. In June of 2015, Alix was asked to speak at TEDWomen. Below is a recorded copy of Alix discussing “How I Learned to Communicate my Inner Life with Aspergers”. She offers her wit, personal stories, and vision for tools to help more people communicate their big ideas.
I was inspired to share the story of the ongoing relationship (both struggles and triumphs) of my husband Herb and our son Sam after creating the below series of photos.
Parenting someone diagnosed with High functioning Autism or Asperger Syndrome begins as a challenge to the adult who had expectations about who their children would be.
Those expectations may be for their son/daughter to be just like them, or to become the person they never were. But these preconceived notions must be disposed of for the child’s success. This is the case with many families facing the newfound diagnosis of Autism or Asperger Syndrome. The high divorce rate among parents with a diagnosed child is testament to the fact that it can be a great struggle that places strain on all areas of life.
When Sam’s Autism diagnosis was revealed to Herb and I some 14 years ago it was raw, new, and life changing to say the least. Our first-born Samuel was struggling in elementary school and until that point we didn’t know why. The Autism/Asperger fact sheet described each misunderstood challenge Sam was displaying and this allowed us insight into creating better communication with our son.
Herb is a man’s man.
His rugged good looks and “pull yourself up by your bootstraps” mentality would not seem a sensitive fit toward parenting a son such as Sam. Sam is unique. But not even Sam knew how he fit in to the world around him, much less how to blossom under a father like Herb.
Once the shock of the word “Autism” wore off, it was time to learn how our son saw the world. I immersed myself into this new and foreign reality. We hung close to those on the same path and chose Sam over society and its demands of conforming to social expectations. In other words, we chose Sam.
Choosing to venture into unknown obsessions (i.e. trains, science, planetary systems, Pokémon, and weather to name a few) gave Herb and his son a common bond. This certainly isn’t a popular decision. You realize this when neighbors, family members, and society in general are taking their kids to soccer games, parties, sporting events, and social clubs without even looking your way.
Breathing room or ‘alone time’ is good for anyone, but for someone on the spectrum it is crucial. When Sam was very young I found myself, as his mother, wanting to arrange play dates with other children who were not exactly knocking on our door for playtime. My reasoning was he must be lonely, so I did everything in my power to elicit playmates. Offering the best snacks, coolest toys, or excursions to area attractions, but it didn’t take long before no one came around.
My son was alone.
What I’ve come to realize is that this is alright with Sam.
He really prefers time alone verses a party. Really. It was me who was projecting my ideas of companionship on him, a neuro-typical brain trying to outguess his autistic brain.
Fast forward 10 or so years and his contentment with an occasional relationship is greatly satisfying for him, and he does have a few. His time alone, however, is a structured necessity for him that keeps him grounded and on-task for the really important things such as work or school.
So as parents we should relax just a bit. Although socialization, to a degree, is important, allow your Aspergers child to be their own person.
Time to read, explore, invent, create or yes, online gaming to a degree can all be good for someone with Aspergers Syndrome. Sam even found companionship via social media sites.
If I could look back at my earlier self I would say “Relax just a bit. He is not as uncomfortable not being invited to parties classmates give, it is only me who is uncomfortable with this”.
Look a bit closer at your Asperger child to understand just how far to push socialization at an early age. You might be going to great means only to satisfy yourself, when in reality a simple outing like a trip to a museum with you might more than suffice.
by Jennifer Allen
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:
In 2013, to fulfill the requirements of my doctoral degree, I surveyed disability service professionals at 578 degree-granting, four-year public institutions of higher education. The survey was designed to determine the current readiness of higher education to support the academic, social and communication, and independent living needs of college students diagnosed with Asperger’s Disorder. 230 colleges participated in the survey.
The survey was designed around the Benchmarks of Effective Supports for College Students with Asperger’s Disorder, a checklist of efforts determined by experts as integral to effective college supports for this student population.
The 2012 study demonstrated college students with Asperger’s Disorder required specialized supports, and that disability services available traditionally on campus to this population were generally ineffective. The 2013 nation-wide survey explored, in part, whether or not colleges had specialized supports for this student population outside of traditional disability services.
The first research question addressed academic supports, and asked:
“What is the current state of readiness within higher education to meet the academic needs of college students with Asperger’s Disorder as described in the Benchmarks of Effective Supports for College Students with Asperger’s Disorder?”
The areas of support investigated and the results of the survey follow:
What parenting styles work for you? Are we emotionally stunting our own children? Greetings, my name is Raeme Bosquez-Greer. I am a Program Director with Southwind Fields and I am a mother of adopted children who have cognitive disabilities. The subject I will be discussing is from the perspective of a mother who has been there and done that, then did it again.
For many years I have spoken to parents from all walks of life that have an array of parenting styles. The dynamics of relationships in a household molds the emotional balance of your child.
Regarding a person with Autism, this statement is intensified because I believe these youths on the spectrum feel more and absorb more than any other human being. This is often shown when observing social skills with a group of strangers, grocery shopping, attempting to live with a roommate and so much more.
I will admit I am everything rolled into one in regard to being a Lawn Mower Mom, and A Helicopter Mom. I hover, and I over protect. As a professional and advocate I have seen too much to not be these types of mothers.
It is very difficult currently to not be overprotective and wanting to insulate our children in a safe bubble.
When a child with Aspergers or High-Functioning Autism demonstrates challenging behaviors, we tend to blame the child’s autism. However, these challenging behaviors are not a byproduct of autism, rather learned due to ineffective means to get needs met—especially when there are barriers to communication.
Bottom line: if an individual does not have a way to communicate appropriately, he or she will find a way to communicate in another way (e.g. screaming or hitting).
Keeping in mind the ABCs of behavior from our previous post, let’s discuss the key to changing behavior.
Behavior is changed when we know the function—or purpose—of the behavior.
I say diverse abilities because one thing that I have learned from working and playing with children and adults with developmental disabilities is that they understand more than neuro-typical children and adults do.
You may understand if you’ve ever heard the phrase “Dance like no one is watching.” and if you crave the freedom and joy that behaving that way can bring. They live their lives like no one is watching. They may not even have the ability to sensor their thoughts. This really brings a sense of freedom and joy that no one else (I know) can truly understand.
It is the rest of the world who has a problem with what a child like this does and says. If society could be “okay” with this, than they could be “okay” with truly BEING authentic with who they are. These “children” taught me so much about being authentic and not worrying about what other people see or think. It was years later, when I became a mother again, that I realized just how much they taught me.
**This blog is a continuation from a previous post by Katherine Goodsell, you can find it here.
As I mentioned in my previous blog, there are thousands of published research studies to support the effectiveness of ABA in treating autism and Aspergers. Specifically, ABA seeks to decrease challenging behaviors and increase appropriate skills that are seen in many individuals with autism or Aspergers.
To help understand what your ABA therapist seeks to accomplish, let’s cover what these terms mean:
Challenging behaviors refer to those behaviors that put the individual in danger, put others around them in danger, or prohibit/limit a person’s use and access to community facilities (Emerson et al., 1987).
Let’s say a 12-year old with high functioning autism, “Jake,” told his overweight teacher that she is fat. The teacher, who was very insulted by the comment and the conversation that followed, sent him to the principal’s office for bad behavior.
From Jake’s perspective, he didn’t understand why he was in trouble for telling the truth. If Jake engages in these types of behaviors regularly, he may soon be unable to access his general education classroom.
As such, this behavior is considered a challenging one that an ABA therapist can help address.
On the other hand, appropriate skills refer to skills that a person needs to be successful. Those skills take into account the person’s chronological age and their cognitive level of functioning.
Appropriate skills include the following: