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!

3 Steps to get Your Child on an Exercise Routine

Did you know that children ages 6 to 13 years need a recommended 9-11 hours of sleep? Did you know that children ages 6 to 17 years need a recommended 60 minutes of exercise every day? Lastly, did you know that research shows a correlation between individuals with autism, exercise, and sleep? David Wachob and David Lorenzi from Indiana University recently conducted a study in which 10 individuals with ASD between the ages of 9-17 years were measured for two things: time spent participating in physical activity and amount of time in restful sleep. Their 7 day study resulted in their participants having more restful sleep as they increased their physical activity during the day. In other words, an increase in exercise like outdoor play meant an increase in sleep. This, in turn, could potentially lead to more positive results like increased attention span, weight loss, behavior changes, and social interactions.

Little boy doing gymnastic exercises

But how do we get our kiddos to move? How do we get them away from the TV and computer? In this blog I will discuss 3 easy steps that will hopefully help get your family moving.

1. Our first step, and probably the most important, is to set the mood in regards to exercise.

Most kids see exercise as a chore when in reality it should be fun. Find something that your child can relate to. This can be stickers, coloring books, games, or tv time (tv time as an incentive) of their favorite show or characters, for example “Big Hero 6”.

ACBighero6

Decorate your workout area in pictures or printouts of their favorite character and make it more inviting. You can even use a “Big Hero 6” t-shirt as their official workout uniform. This will hopefully shed some positive/fun perspective on exercise.

2. Our second step is finding an activity to do.

Transitioning to Adulthood with Aspergers

Individuals diagnosed with Aspergers or another autism spectrum disorder (ASD) may be presented with many challenges throughout their lives—especially during the transitional periods. As the individuals age and learn to use different skills in various environments, families, educators, medical professionals and the individuals themselves begin to anticipate the transition to adolescence and, eventually, to adulthood. Given the differences in abilities and behaviors that many individuals with Aspergers or HFA experience, it can often be overwhelming to plan for tomorrow much less several years later.

IMG_0879

Among the many skills that an individual must learn to successfully transition to adolescence and adulthood, daily living skills are often neglected.

Examples of daily living skills are bathing, grooming, preparing meals, managing finances, using public transportation, etc. These daily skills are necessary for independent functioning in the home and within the community.

A recent study discovered that individuals with ASD improved in daily living skills during adolescence and the early twenties. These skills plateaued around late twenties and began to decline in the early thirties—this shows the importance of honing these skills earlier in life instead of waiting until later.

Some positive findings were that inclusive schooling had a positive influence on adult outcomes. The study also found, “that vocational independence predicts improvements in autism symptoms and significant improvements in behavioral problems.” Daily living skills could also be increased by engaging in some type of work activity.

It is encouraging that daily living skills can continue to be gained at later points in development as other skills plateau. The authors suggest that more research is needed to develop behavioral and pharmacological interventions for older individuals on the autism spectrum.

While individuals with Aspergers or HFA may have challenges with the daily living skills necessary for transitional periods, it is important for their independence and quality of life to begin this journey at an early age to ensure success.

by Lupe Castañeda, M.S., BCBA

Have you thought about or experienced the transitional periods in your or your child’s life?

How did you cope with these experiences? 

Sources:

Smith L.E, Maenner, M.J. & Seltzer, M. (2012). Developmental Trajectories in Adolescents and Adults with Autism: The Case of Daily Living Skills. Journal of American Academy of Child and Adolescent Psychiatry.  51(6): 622–631.

Aspergers is Not the Same as ODD (Oppositional Defiant Disorder)!

People with Asperger’s usually collect labels like ADHD, anxiety disorders, or bipolar disorder before they’re diagnosed with AS. The label that annoys me is Oppositional Defiant Disorder. Is there a difference between people whose Asperger’s-related behavior is misunderstood and ODD? I find that ODD is sometimes simply a description of behavior without a cause.

Insurers ask for diagnoses based on ICD 10, the “handbook” of diagnoses. One of the official ICD 10 descriptions of AS is that it’s a “neuropsychiatric disorder whose major manifestations is an inability to interact socially; other features include poor verbal and motor skills, single mindedness, and social withdrawal.”

ICD 10 describes ODD as a behavior disorder and a psychopathological disorder. It’s described as a “recurrent pattern of negativistic, defiant, disobedient, and hostile behavior toward authority figures.”  The criteria include “frequent occurrence of at least four of the following behaviors: losing temper, arguing with adults, actively defying or refusing to comply with requests or rules of adults, deliberately annoying others, blaming others for own mistakes, and being easily annoyed, angry or resentful.”

ICD 10 is right in my experience in describing those with Asperger’s Syndrome as “single minded.” This is a real strength when doing tasks, following rules and being honest. However, single mindedness can also include inflexibility or even severe rigidity in sticking to a point of view.

When an inflexible demand is made of an inflexible person, you have rigidity meeting rigidity. That’s not going to work. For people with AS, what’s being perceived as oppositional, hostile or rule breaking is actually more about having a fixed way of viewing the world.

Especially when rules or demands seem illogical or unfair, those with AS can dig in and stand their ground. Many with AS and NLD also have concrete or literal thinking, which adds to the mix of misunderstanding and “rule breaking.”

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.

What If It Snowed In San Antonio?

A Care-giver Series: by Dr. Ghia Edwards

This is the third installment of my piece speaking about the health of a caregiver and it has been an interesting journey these past weeks. We as caregivers get in such and stay in such serious modes, that sometimes it takes something drastic to pop us out of our self imposed prisons of heaviness and sometimes fear. It was almost two years ago to the date that in San Antonio and much of Texas it full on snowed! Now for some of us who were raised around snow, (my parents were bi coastal people), this could have seemed mundane but it was not anything of the sort. I was so happy and joyful that it was snowing, I surprised myself and as I looked around me, everyone and I mean everyone was smiling and laughing and making snowballs and snowmen. Then it hit me, it hit me why I had to wait till this very moment to write this very thing. Life and it’s tragedies are real but in those moments of lifting and or explaining, or seeing people’s faces in reaction to perhaps a behavior your person was exhibiting, in those moments the divine breaks in. Now maybe it’s not snow in the south or something as drastic as that but I believe wholeheartedly that we are given sweet miracle moments that release us from the prison and remind us that we are free to live and enjoy and to find joy in the big and little things in life. I can tell you, I love each and every one of you who are struggling to be, when you don’t even know if you can put one foot in front of the other. I send you thoughts and knowledge that you can find the divine and joy in your task of caregiving, you just have to seek them, to go after them because joy can seem fleeting like the melting snow but the take away is this. When we can choose to see the beauty in a smile, or in a victorious moment where we somehow connect to and with our people, then that is where we see the miracles happen of this season and all year round . We may feel exhausted and cranky sometimes as caregivers but let us remember the beauty we are giving we get back in unexpected ways. Seek those moments and I know you will not be disappointed.

Joy and Peace,

Dr. Ghia

dr.ghia7@gmail.com

 

The Destroying Sociopath

The Monster that Seeks to Manipulate, Fracture and Demolish

It is not Aspergers nor Autism, but it’s a comorbidity that, if undiagnosed may devour, destroy and create a lifetime of chaos in the families they ‘belong’ to. A sociopath is a term used to describe someone who has antisocial personality disorder (ASPD). People with ASPD can’t understand others’ feelings. They’ll often break rules or make impulsive decisions without feeling guilty for the harm they cause. People with ASPD may also use “mind games” to control friends, family members, co-workers, and even strangers. They may also be perceived as charismatic or charming. Know this is NOT autism, it is a comorbidity commonly known as ASPD or Antisocial Personality Disorder.

The above is a clinical definition, but to those abused in the wake of their path, it reads a lifetime of pain. It is a destroyer. It’s what you pray for protection from…and it just might be a family member.

Some people respond to the emotionless stare of a skilled manipulator with discomfort, while others feel hypnotized by them.

The parent must see the signs to recognize and acknowledge their child (or self) has such symptoms. If not for the child, than for the lifetime of grief and destruction (sometimes death) the sociopath will inflict upon all family members and those in their path. Getting early treatment is vital in dealing with all aggressive mental disorders including bi-polar, schizophrenia, mania, oppositional defiant disorder and more. With appropriate diagnosis and treatment, people may find relief from their symptoms and discover ways to cope effectively.

They are compulsive liars and even if they do apologize, it’s never genuine

Sociopaths are people who have little to no conscience. They will lie, cheat, steal and manipulate others for their own benefit. They know exactly what they are doing, they just don’t care because they don’t think that way. If you are naive enough, they will brainwash you into doing exactly what they say and what they want which is the only time a sociopath is truly happy.
Sociopaths can hide this well if you haven’t known them for long. They’re really nice and charming at first, almost too nice, but it’s extremely fake. The niceness will last until a problem occurs in which they are at fault however, you will be manipulated to believe that you are in the wrong. There is no reasoning with this person. Things have to be their way or it’s the highway. They will blame you for hurting them (even if they’re the ones who hurt you) or blame the world for all their problems. They are compulsive liars and even if they do apologize, it’s never genuine. Most are anti social and have few to no friends because most people around them don’t want to associate with them. However the sociopath will again tell you that “people hate me for no reason/the world is against me”. It is said that the only person who will put up with a sociopath is someone who is off their rocker or someone who has absolutely no self respect or quite possibly, it is a relative and not so easy to disassociate.

Sociopathy is more likely the product of childhood trauma and physical or emotional abuse. Because sociopathy appears to be learned rather than innate, sociopaths are capable of empathy in certain circumstances, and with certain individuals, but not others.

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), released by the American Psychiatric Association in 2013, lists both sociopathy and psychopathy under the heading of
Antisocial Personality Disorders (ASPD). These disorders share many common behavioral traits, which leads to some of the confusion.

Samaki Bilakichwa Studies of depression and personality disorders.

Key traits that sociopaths and psychopaths share include:

  • A disregard for laws and social mores
  • A disregard for the rights of others
  • A failure to feel remorse or guilt
  • A tendency to display violent or aggressive behavior

Sociopaths tend to be nervous and easily agitated. They are volatile and prone to emotional outbursts, including fits of rage. They are more likely than are psychopaths to be uneducated and live on the fringes of society. They are sometimes unable to hold down a steady job or to stay in one place for very long. It is often difficult, but not entirely impossible, for sociopaths to form attachments with others.

Many sociopaths are able to form an attachment to a particular individual or group, although they have no regard for society or its rules in general. Therefore, the meaningful attachments of any sociopath will be few in number and limited in scope. As a rule, they will struggle with relationships.   

One surprising aspect is to see how they enjoy other people’s pain and hardship.

Bill Eddy, LCSW, JD, Training Director of the High Conflict Institute in San Diego

Profile of the Sociopath

Common features of descriptions of the behavior of sociopaths.

  • Glibness and Superficial Charm

  • Manipulative and Conning
    They never recognize the rights of others and see their self-serving behaviors as permissible. They appear to be charming, yet are covertly hostile and domineering, seeing their victim as merely an instrument to be used. They may dominate and humiliate their victims.

  • Grandiose Sense of Self
    Feels entitled to certain things as “their right.”

  • Pathological Lying
    Has no problem lying coolly and easily and it is almost impossible for them to be truthful on a consistent basis. Can create, and get caught up in, a complex belief about their own powers and abilities. Extremely convincing and even able to pass lie detector tests.

  • Lack of Remorse, Shame or Guilt
    A deep seated rage, which is split off and repressed, is at their core. Does not see others around them as people, but only as targets and opportunities. Instead of friends, they have victims and accomplices who end up as victims. The end always justifies the means and they let nothing stand in their way.

  • Shallow Emotions
    When they show what seems to be warmth, joy, love and compassion it is more feigned than experienced and serves an ulterior motive. Outraged by insignificant matters, yet remaining unmoved and cold by what would upset a normal person. Since they are not genuine, neither are their promises.

  • Incapacity for Love

  • Need for Stimulation
    Living on the edge. Verbal outbursts and physical punishments are normal. Promiscuity and gambling are common.

  • Callousness/Lack of Empathy
    Unable to empathize with the pain of their victims, having only contempt for others’ feelings of distress and readily taking advantage of them.

  • Poor Behavioral Controls/Impulsive Nature
    Rage and abuse, alternating with small expressions of love and approval produce an addictive cycle for abuser and abused, as well as creating hopelessness in the victim. Believe they are all-powerful, all-knowing, entitled to every wish, no sense of personal boundaries, no concern for their impact on others.

  • Early Behavior Problems/Juvenile Delinquency
    Usually has a history of behavioral and academic difficulties, yet “gets by” by conning others. Problems in making and keeping friends; aberrant behaviors such as cruelty to people or animals, stealing, etc.

  • Irresponsibility/Unreliability
    Not concerned about wrecking others’ lives and dreams. Oblivious or indifferent to the devastation they cause. Does not accept blame themselves, but blames others, even for acts they obviously committed.

  • Promiscuous Sexual Behavior/Infidelity
    Promiscuity, child sexual abuse, rape and sexual acting out of all sorts.

  • Lack of Realistic Life Plan/Parasitic Lifestyle
    Tends to move around a lot or makes all encompassing promises for the future, poor work ethic but exploits others effectively.

  • Criminal or Entrepreneurial Versatility
    Changes their image as needed to avoid prosecution. Changes life story readily.

Thanksgiving Reminder: “One Size Does Not Fit All” with Autism

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.

by: Shannon Doty and Dr. Jeffrey Deutsch

Madison House Autism Foundation

5 Focuses For Creating a Learning Environment in the Home

When it comes to setting the stage for learning, individuals on the Autism Spectrum need to continue their learning experiences even after school. This requires responsibility from therapists, caregivers, and parents. Each must work together to help create a learning environment in the home that continues to provide opportunity to expand the vital skills a child is working on. This includes setting up a home environment, understanding your child’s classroom setup or making suggestions at their after school program.

Child playing at home

Here are five goals to focus on when evaluating a school-related learning environment in the home for children with Aspergers or HFA.

1. Increase Engagement:

It’s ok for kids to take a break after school and have some down time, but preventing total shutout is important. Whether it is a play activity or helping with homework, making this part of the routine will assist with expectations that the child will need to interact for an expected amount of time.

2. Increase Communication:

Asking the question “how was your day?” rarely gets the response desired. To get them to chat, incorporate out of the ordinary or silly situations to spark spontaneous requests or comments. (e.g. carrying an umbrella when it isn’t raining or dressing up the dog before your child gets home). Sometimes a child may need a prompt to take note about the change in environment, but that is ok! It increases the opportunity to communicate either way

3. Promote Independence:

Use visual charts to show the steps expected to follow directions without reminders. This is especially useful for morning and bedtime routines. It may take some time to teach the sequence to complete the task. However, using the visual will allow the child to find the solution on their own rather than get in trouble for not completing the task.

Aspergers101 FB Livestreaming Series: 7P TONIGHT!

Tonight at 7pm, we continue to offer you our year-end giving of information with the Aspergers101 Facebook Live-streaming Series. Tonight’s topic is one you might want to share with someone suspecting they, or their child, might have a form of Autism or Asperger Syndrome. It is as important to know one way or the other. Our guest speaker is Dr. Berenice de la Cruz, will she offers an overview and insight into the signs of autism. Additionally we will offer downloadables….there is no charge for admission! Just go to the Aspergers101 Facebook Page at 7pm (CST) tonight.

 

What: Suspect Autism or Asperger Syndrome?

Where: Aspergers101 Facebook Page

When: TONIGHT! 7p (CST) Monday October 21st

Why: Do you suspect someone you love has autism or Asperger Syndrome? This pre-recorded program explores the signs, the medical explanation, and the hardwired facts. Topics discussed will be the importance of diagnosis, grief, and moving forward with awareness. Hosted by Jennifer Allen & son Samuel Allen, Co-founders of Aspergers101. Special guest: Dr. Berenice de la Cruz, Ph.D., BCBA-D (runtime 1:31:18) Panel discussion follows.