Aspergers101 to Retire

A Farewell from Founder Jennifer Allen

The office of Aspergers101 (l to r) Jennifer Allen and son Samuel consult
Photo: Kin Man Hui /San Antonio Express-News

It is with a grateful yet pricked heart that I announce my retirement of Aspergers101 effective, today December 31st, 2019. The timing is right as we leave accomplishing more than our small family-run organization is able to propel any further. We will be handing off a large portion of Aspergers101 to our Texas Governor’s Committee on People with Disabilities who will graciously keep our “Driving with Autism” Texas initiative thriving and permanently available on their website to Texans and all states nationwide, beginning in January 2020.

When we started the work of Aspergers101, many years before it became a registered 501c3 non-profit organization in 2014, our son Samuel was in elementary school and struggling as there were little to no resources to learn about Asperger Syndrome. I felt as though me and my family had been crashed and deserted on a small island with little resources on survival. Navigating Autism wasn’t just new to us, the medical community had only begun to turn their attention toward this often overlooked, misdiagnosed condition. I quit my full time job and immersed myself in understanding Autism Spectrum Disorders. I immersed myself in my family. From that difficult time grew a love toward those struggling as we did. The heartbeat of Aspergers101 has always been to the rhythm of the desire to make available the information I never had with Sam. It is you who inspired Aspergers101.

We’ve included several downloadables of information we’ve published on Asperger Syndrome over the years and hope you take advantage by keeping them for yourself and/or sharing with someone in need!

Jennifer Allen/Founder Aspergers101

Fast forward to today at the eve of 2020 and there are many autism resources available for you than ever before. Movies, TV shows, websites, clinics, employers, law enforcement and schools now have a better understanding (and accommodation) of those on and around the autism spectrum. We’ve got a long way yet to go… but have come quite a distance in the past decade. Our son Samuel is now 24 years old, college graduate, driving and thriving with full time employment in IT at H-E-B! As our family takes another fork in the road toward Sam’s independence, it is time that we must part our journey together. It lasted longer and went much higher and further than I could have ever imagined, but I pass the baton off to the next trailblazer whose time, endurance, funds, resources and age enables them to serve. There are so many excellent organizations geared toward autism and asperger syndrome and that is why I am certain of the time to step aside and wish you the very best on your continued journey!

What’s Next?

“A look forward” at the end of this blog, will offer an explanation for how Aspergers101 will live on. However, before we look forward, I invite you to read on and take a look back at all we’ve been through together over the past decade! It’s been quite a journey we’ve taken together. We’ve included several downloadables of our information we’ve published on Asperger Syndrome over the years and hope you take advantage by keeping for yourself and/or sharing with someone in need! Below offers you a bullet-point glimpse at the highlights of Aspergers101 and the outreach that exceeded our vision. This includes conferences & meet-ups with so many of you, televised broadcasts, our endearing friendship & partnership with Dr. Temple Grandin, the making and airing of our family documentary “Coping to Excelling”, the 2 Texas Legislative successes and oh so much more!

Ten Ideas to Live Healthier and Feel Better: Divergent Thinkers (Aspergers, NLD) and Everyone

with Marcia Eckerd, Ph.D.

  1. Respect yourself.   As hard as things have been, focus on your strengths. Your path, however bumpy, has gotten you the be the person you are. You are unique, and no one else can contribute your insight and perspective.
  2. Reach out for support.   If you have family or friends who “get it,” that’s terrific. If not, there’s communities of support out there on Facebook, like “The Aspergian Has An Article for That” and “Autism Support and Discussion Group”. People have had similar experiences and are working on the same issues.
  3. Advocate for yourself. No one can see inside you.   Consider how best to communicate to the person who is listening. With some people, you can probably say what you want plainly. For others, help them understand. You might try this: say something positive (I want to do a good job), then your need: (but I need a quieter place to work) and then something positive (I’ll be able to get that done). Or, another example: positive (I want us to get along), need (so I need you to be clear and not expect I know what you want), positive (that will really help).
  4. Take care of your health.  Your body is critical to your mood, your ability to think and your wellbeing. Too many people don’t get enough sleep, eat well or take the time to take care of themselves. Treat yourself to a recharging walk to somewhere you enjoy (or nap), whatever works for you.
  5.  Meditate   It’s been proven that mediation can structurally change your brain to be more stress resilient, and it’s like creating a center of calm for yourself. There’s many ways to do it (mindfulness, repeating a phrase, yoga, even walking). You’ll find great apps to lead you through mediation like Calm, Headspace and Insight Timer.
  6. Know yourself     Know your triggers for emotional and sensory overload and early warning signs in your thinking, feeling or body that say it’s getting too much. Have strategies you’ve pre-thought for calming down, whether it’s something like taking a walk, listening to music, doing a minute or two of meditation, anything that works.
  7. Have strategies    If you can’t escape going into difficult situations, have strategies for handling it. Short doses, taking time outs. Use self-advocacy to share that this situation is difficult and what might be helpful. If that doesn’t work and this situation keeps recurring, there’s something fundamentally wrong with this situation and you might have to think about how to change it.
  8. Have compassion for yourself    We all do our best and no one is perfect. You may have made mistakes and regret them but that’s how we learn. You need to give yourself the compassion you’d want to give a friend in the same situation.
  9. Let go of anger     This saying is allegedly attributed to the Buddha: He who holds onto anger is like the man who drinks poison and expects the other person to die. Anger stimulates your stress response so your autonomic nervous system stays in fight/flight mode. This is bad for your health, your immunity and your outlook on yourself and life. I’m not saying forget, just do whatever re-centers your focus on how you overcame (or can overcome) whatever obstacle you encountered. You’ve undoubtedly had some good experiences; focus on them as balancing the negative.
  10. Learn the serenity prayer.    Give me the serenity to accept what I can’t change, the courage to change what I can, and the wisdom to know the difference.

How to cope with Anxiety and Fear

Anxiety symptoms and reactions are very common in individuals with autism spectrum disorder (ASD). They can interfere with functioning across home, community and school settings. Scientific studies have found that from 11 to 84 percent of youth with autism suffer from anxiety symptoms – intense fear, trouble concentrating, rapid heartbeat, tension, restlessness or sleeplessness. Lisa Rogers with Educating Diverse Learners answers a reader’s question about helping her son overcome his daily stressor. 

Q: Dear Lisa,

My son has fears. One thought gives him daily anxiety: that of his pants not staying up. We tried belts that he buckles too tightly. He still fears the pants will fall and the buckle gives extra sensory problems. We tried sweatpants that he ties tightly, still fearful. All day he hikes his pants up. I tried to show him the pants can’t fall down but this doesn’t help. He also insists on wearing underwear two sizes too big. He is 8 and diagnosed as PDD-NOS. Could you direct me to any information to help him? This fear is causing multiple meltdowns daily. I don’t know what to do.

Thank you.

-Anonymous

A: Dear Mom or Dad,

Multiple meltdowns each day can certainly take its toll on your son and your family. I understand how critical this issue is for you and will do my best to provide helpful information for you to consider.

In order to be most helpful, I do need to ask a few questions first.

  • Is your son able to explain in any way what is causing or contributing to this fear? You mention that this is a current situation and so any insight about the reason for this development will be helpful. As you know, children on the autism spectrum are often rule-driven and literal in their interpretation of language. Perhaps something an adult said with good intentions about the importance of keeping your pants up or a scene from a movie could be a root cause? On the surface this might seem silly, but this can help in better understanding your son and his very real fear.
  • If your son is able to communicate through words or pictures, you might try cartooning as a way to acquire insight. When he is calm and all is well, you can sit together and draw a cartoon where you ask him to describe his thoughts while he is walking with his pants snug and tight around his waist. If not too stressful for him, you could even draw a picture with pants falling down on a stick figure and ask him to describe his ideas/feelings about this.
  • Have you already tried suspenders or even overalls to provide a sense of security beyond a belt or tie? It sounds like there are compounding sensory issues and so these might not be feasible options.

For now, here are a few ideas to consider . . .

I. Due to neurological differences, individuals with autism often experience a higher level of stress and anxiety. Structure, however, makes events predictable and helps to reduces stress, confusion, and anxiety.

So while you want an answer to your immediate problem, adding structure may be a critical preventive key to decrease anxiety which may be contributing to the presenting problem. A few ways to add structure at both school and home include the following:

  • Establish set routines at school and at home
  • Create daily schedules, weekly calendars and lists
  • Use visual cues like checklists with photos
  • Establish clear visual cues so that they can understand what work is expected, how much work is required, and how they know when they are finished the work
  • Make transitions predictable and regular
  • Provide tools, such as “surprise cards” to help deal with unanticipated or even planned changes in the routine

Here are a couple of resources for building structure at home:

http://www.freeprintablebehaviorcharts.com/autism_and_routines.htm
http://asdteacher.com/picturechoiceboard/

II. Does your son have any favorite characters or things? If so, these special interests can be used to help him deal with his anxiety/fear about his pants falling down. Power Cards have been found to be effective for some children with special interests.

A Power Card involves including special interests with visual aids to teach and reinforce academic, behavioral and social skills to individuals with Autism Spectrum Disorders. By using their special interest, the individual is motivated to use the strategy presented in the scenario and on the Power Card. It’s a positive strategy that is often entertaining as well as inexpensive and simple to develop.

It can be used when an individual lacks the understanding of his/her expectations, to clarify choices, to teach cause and effect between a specific behavior and its consequence, to teach another’s perspective, to aide in generalization, or as a visual reminder of appropriate behavioral expectations of a situation.

DIR/Floortime Method for Social-Emotional Growth of Children with ASD

Although our emphasis is often focused on early intervention, it is important to consider various types of interventions that can grow with the child with Aspergers or HFA as they grow into adolescence, another area of huge potential growth. One approach that has demonstrated clinical impact is DIR/Floortime. This method is a relationship-based, developmental framework that is geared toward supporting foundational social-emotional capacities.

The DIR Model, or Floortime, aims to support higher level thinking abilities of multicausal and reflective thinking by building foundational stability in self-regulation and co-regulation with another. DIR/Floortime incorporates techniques and strategies geared toward promotion of more stable and more flexible emotional regulation in the child or adolescent.

Give the Gift of Information!

Excellent basic overview of High Functioning Autism and Aspergers Syndrome!

The Coping to Excelling documentary sheds illuminating light on the topic of High-Functioning Autism and Asperger’s Syndrome in school-aged children. Narrated by a Mother of a son with Asperger’s, this engaging program allows the viewer to ‘see through the eyes’ of those on the high end of the autism spectrum while getting advice from experts such as Dr. Temple Grandin, Dr. Tony Attwood, Jennifer McIlwee Myers, Billy Edwards and many more!

“I would strongly recommend the Coping to Excelling DVD not only for parents, especially those of a newly diagnosed child, but also for teachers and professionals!”

– Dr. Tony Attwood

 

 

 

The DVD, Coping to Excelling, is divided into 5 chapters each lasting just over 10 minutes. The chapters may be viewed independently or the entire Documentary (lasting 68 minutes) may be viewed in it’s entirety.

Chapters include:

  • Understanding High-Functioning Autism or Asperger Syndrome – a broad overview
  • The Family Unit – The importance thereof
  • Choices in Education – Pro’s and con’s of all methods
  • Bullying – re-enactments and solutions
  • Social Development – suggestions and tools from the experts

 

Purchase Here

 

 

Product details

Using Topic Cards to Develop Social Skills in ASD Youth

Topic cards are similar to scripts in that they can help students engage in a variety of topics, beyond their own interests. They are different in that they include just a few words that describe a topic that launch a student or group students in a particular direction. 

Using Choice to Increase Academic Success

A teacher had created a special lunch group to help a student at the middle school level engage in appropriate teen conversations. She had one main interest and it would dominate every conversation. Her interest was in princesses and everything having to do with them. For most young teen girls, princesses were not much of an interesting topic for them.

Apart From the Crowd: Isolation in the Early Years of Diagnosis

A Quick Read

Even before the official diagnosis of Asperger’s Syndrome, we knew our son Sam walked apart from the crowd. His early intense interest in a subject matter, and not in his peers, was the perfect mix for oddity starting the early sociable elementary years.

While we, as Sam’s parents, grew to walk alongside (and later celebrate) the unique perspective Sam had on the world, it was me who was shocked to be set apart from the crowd.

(l to r) Charlie, Jennifer, Herb and Sam

The elementary years were full of field trips, lunch visits, and homeroom activities. When it came time for picking groups for the field trips, my son was not one who other mothers wanted for their sons. At this early age, most mothers were positioning their children to be the best, only with the best, and we didn’t fit their criteria.

So for many of those early years Sam and I sat alone as other mothers invited the more social children to sit with them. Support did not come in familiar places: relatives, neighbors, team sports, youth groups or, field trip Moms. In fact, it was those who were actually abusive to Sam that set the stage for above and beyond parental protection. So different from my youth or perceived visions of parenthood. After the shock and heart wrenching pain for my son, the realization sat in that I too, was isolated.

How Our Family Responded to Isolation

Our family had hit a harsh reality, so we decided to fight back in a way that did no harm to anyone, but bolstered our son’s confidence. We chose our son over the crowd. We eliminated the negative and stuck to the positives. My Mom and Dad (both have since passed) were so very supportive and loving and choose to take a big role in both our sons lives. We clung to that love and our sons were nurtured and flourished. You don’t need or should expect everyone in your family(s) to be supportive, just enjoy who does and build upon that. Together the four of us found a loving church home, become interested in all things our sons were interested in, enjoyed those who did make a conscience effort to be a positive part of our sons lives, traveled on weekends (verses attending typical soccer games), and marched to a new rhythm I had never heard before! At first it was scary, going a route we’ve never taken before. However, after removing the negatives, the anxious worry quickly subsided and Sam (and the rest of us) blossomed!

Hello to star-gazing, train following, computer lessons, pokemon’ tournaments….well you have your list too!

Being apart from the crowd became the norm and our sons both flourished.

I write this not to feel sad or ‘wallow’ in self-pity. Nor have I listed the struggles (you can refer to other posts covering that) of the journey. I write about the choice because it is that simple. Because this probably happens to many parents of a child on the spectrum. I want to encourage you to persevere and hold onto the unique qualities that are the very being of your Asperger child and to let go of any expectations you may have of others taking part. Bottom line: Forge your own path for your child and take along the handful of people who do want to be a part.

It does get easier the older they get, and the reward will be a son or daughter who knows that their uniqueness is a gift. Recently Sam was asked what it “felt” like to have Autism. His matter of fact reply was priceless: “Don’t think of Autism as a weight, think of it as a pair of wings”.

Being apart from the crowd is a great thing indeed.

By Jennifer Allen