Managing the Crushing Blow of Disappointment & Lies

Aspergers101 for the Parent

As neurotypicals, disappointments come early in life. We learn quickly that all we desire is not all that is intended for us. We learn, through a trail of unrealized dreams, to be content with our lot or find another pathway toward our goal(s).

Having a child on the autism spectrum redefines the above lesson. Managing your ASD child’s crushing blow of disappointment comes with a different manual altogether. When it comes to disappointment through deceivers and manipulators…those with an Autism Spectrum Disorder are susceptible to exploitation. ASD is, at its core, a disorder of social functioning and cognition. Just saying old phrases like, “That’s life” or “Pull yourself up by your bootstraps” or “That’s how the ball bounces” makes no sense to them and sets them off into further confusion and strife. Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected. Knowing how to help them is first to understand that your autistic child is wired differently and being lied to will take more than standard sayings to overcome. In other words, like everything else in parenting a child on the autism spectrum, it may take a well thought out talk but you can relieve your child’s mind….and yours by a few steps.

Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected.

-Jennifer Allen

Manage their Expectations

In looking back on raising a son on the autism spectrum, this was and still is an everyday activity. Managing their expectations takes time, communication and preparation. My part as a parent has waned a bit as our son ages, as I am beginning to see how he attempts to prepare himself for daily potential challenges. This preparation begins with a comforting knowledge of facts. Let me give an simplified example but one that you can plug most any upcoming event into. Remember, this is just about managing the small unknown(s). We will get into the larger scenarios later.

Here is the situation: Church is going to be extra crowded on Sunday because it’s Easter Sunday. We then think of the challenging ramifications that overcrowding may bring and discuss solutions.

The Challenges Discussed:

  1. We may not be able to sit in the same pew/area we usually do
  2. There may be louder sounds with more children in the service
  3. It may take us longer to go eat lunch as crowds are larger during Easter Sunday at restaurants

So we go over the potential challenges and discuss the following choices to avoid disappointment, expectations or meltdowns:

The Solutions Discussed:

  1. Let’s leave extra early to get our usual seating -or- would we take the opportunity to sit elsewhere and see what that is like?
  2. With the onset of more crying babies, would you want to use noise-cancelling headsets? Go to foyer if it gets too loud? Other suggestions?
  3. Since it may take longer to get to a restaurant can you set in your mind it might take 30 minutes longer than usual to eat lunch? Would you rather forego crowded Easter Sunday restaurant crowds and eat at home?

The challenge/solution exercise helps to prepare your child for what disappointments might be just ahead. The less amount of surprises the better for a factual mind. This activity prepared our son throughout his young life and now we are starting to see him work through this for himself as an adult. This practice certainly helps prepare for the unexpected but what happens when they are promised something and it’s never delivered. Or a blatant lie is told to them and they keep trusting the source will do as they say but you realize they never will? In other words, how to you explain to the pure believer that the world is corrupt and sometimes people are going to lie to you. Most deal with this topic when their children are very young, but to the parent of a child with Autism it’s ongoing. You know they take everything literally and hidden meaning or ulterior motives is a concept most difficult to grasp. For the autistic brain it’s confusing, painful and sometimes paralyzing.

Is Mindfulness Logical for Asperger’s and Depression?

Mediation and Self-Talk

Mindfulness, meditation and self-talk are important ways of helping yourself when you’re depressed, stressed out, anxious or emotional. They’ve been shown to help handle feelings and are actually often used as components of the most helpful forms of therapy, cognitive therapy.

Why is it important to talk about these three techniques, especially for those with Asperger’s?

Two typical traits for those with Asperger’s are black and white thinking and a tendency to ruminate, to stew thinking about something. With black and white thinking, we see things in extremes, all bad or all good. When we’re depressed, that tends to be all bad.

Mindfulness, Meditation, Self-Talk

All bad isn’t realistic; life is always a mix. Things don’t always go wrong. People aren’t always hostile or rejecting. Ruminating means dwelling on something, usually negative when we’re depressed. As we dwell on our thoughts, they tend to become more dramatic, more overwhelming, more conclusive of our negativity. It’s like a downward spiral.

Both black and white thinking and rumination focus on the past, revisiting what has happened, or in the future, anticipating what might happen. We’re rarely in the present. Most often, at this exact moment, nothing too stressful is happening.

The point of mindfulness as an outlook, a way of being, is that it focuses on the present moment – our awareness of what’s happening right now.

Mindfulness exercises include activities that force us to focus on the here and now. Focus can be on attending to our breath, what we hear, bodily sensations, or what we’re doing, like the feelings of washing dishes, the soap on our hands, the feeling of the water, the texture of the plate and glass. This pulls us out of the past and future into the present, which tends to be calmer.

Meditation is a practice for both the body and mind.

When we’re emotionally aroused or stressed, our entire autonomic nervous system is activated. Blood pressure goes up, breathing changes, stress hormones race through our bodies, and every system is affected.

We can be stressed in this way both by what goes on in the moment and by what goes on in our minds – thinking about something can trigger the same physical stress response as being in that moment. Emotionally we’re at a high level of arousal, regardless of what’s happening in the moment. Meditation turns off the stress response, and teaches our bodies what Herbert Benson of Harvard calls the “relaxation response.” Meditation has actually been scientifically proven to structurally change the brain to be more stress-resilient.

Understanding Special Interests and Aspergers

How to find the balance and productively use them at home and in class

Q:Dear Lisa,

“I have a son diagnosed with moderate to high-Functioning Autism who is currently enrolled in public Middle School. Though he is going through a natural teenage rebellion, I feel his autism is playing a huge role in the challenges he (and we, his parents) is currently facing. He struggles to communicate and he has poor receptive language, so even though he is very verbal- a lot of times he misunderstands. And then he misinterprets and he gets very angry.

He has been on meds since he was 5 to maintain mood. In the last few months he has become increasingly consumed with the computer, staying up late, wanting to sleep late, and only coming out for food. I know how to do all the schedules and what not, but he doesn’t care or want to comply. He is 6 ft tall and 250 pounds. He has an excellent teacher that provides structure in his Total Language Communication class.

Our son Trevor is addicted to technology. When we (his parents) as well as his teacher at school try and limit on-line play time he has become angry to the point to hitting the teacher and his father.

He ran away from home but the police brought him back that same day. I hate the computer! But he plays Minecraft online and has friends that he talks to. It is like his only source of socialization. So we are at a point where we may need professional support to help him get motivated to do something. I’m out of ideas. And I’m tired. please help!”

-Rebecca

A: Dear Rebecca,

Thank you for your very specific question that I’m sure many will relate to very closely. This is one of the most frequent questions that I am asked from both parents and educators.

In an Interactive Autism Network (IAN) questionnaire of 250 adults with ASD, 84 percent reported having a special interest or topic. A majority of those said they enjoy activities or develop relationships based on their topic, or have a job or field of study related to it. Some, however, said their interest sometimes gets in the way of success at work, school and in relationships (45 percent), or has gotten them into trouble (23 percent). Common interests include animals, computers, music, science and science fiction.

Famously, Temple Grandin Ph.D., who has Autism, turned her special interest in animals into a notable career as an animal scientist and designer of livestock handling facilities.

ABA and Aspergers: The Three Step Plan You Can Use

The main use of ABA for individuals on the autism spectrum is to decrease challenging behaviors and increase appropriate skills.

Little girl hiding behind her hands - copyspace

Here are the three steps for utilizing ABA to decrease challenging behaviors and increase appropriate skills:

Step 1: Assessment

The first step in decreasing problem behavior is to conduct a functional behavior assessment, which determines the function of challenging behavior.

Appropriate skills including academic, language, and daily living skills are assessed in a similar way. The founding father of ABA, B.F. Skinner, wrote the book Verbal Behavior in 1957. In the book, language is analyzed based on the function. Assessments like the Verbal Behavior-Milestones and Assessment Program (VB-MAPP; Sundberg, 2008) are utilized to assess the persons’ language skills, as well as other appropriate skills like academic and daily living skills.

Other assessments utilized in ABA are the Assessment of Basic Language and Learning Skills-Revised (ABBLS-R; Partington, 2006) and the Assessment of Functional Living Skills (AFLS; Partington & Mueller, 2013).

Step 2: Developing a Plan and Treatment Goals

23 Truths I learned From Social Skills Training

When I was diagnosed with Aspergers, my parents enrolled me in 48 hours a week of social skills and coping mechanism training. That was 10 years ago. These are 23 friendly suggestions I still find to be true and carry with me today.

Alix Generous

Alix Generous

My 23 Truths

  1. Never follow advice that you intend to carry out by hurting another living being.
  2. Find what you love and pursue it even if it means working twice as hard in other areas of your life in order to do so. It can be one thing or it can be many. Obsessions and interests can lead to successful careers. Additionally, if you’re interested in a task you’ll do better at it.
  3. Following blind happiness is a better decision than choosing certain unhappiness, as long as you apply appropriate practical skills and common sense (which can be learned in a Google search). No matter where you are and what situation you may be in, this isn’t your parent’s, boss, or teacher’s life, it’s your own. With the accumulation of knowledge and self discovery you can make choices that will shape the life you want. If you want to be a scientist, do what you need to in order to make that happen. That path is not exactly linear, you might have to do things differently than others, but that doesn’t make it bad or wrong to pursue. I had an incredible amount of difficulty socially when I started college in Charleston, SC. It was the weirdest feeling because I had wonderful friends there as well as great education and academic support. It never made sense why I was unhappy there but the moment I moved up to Boston 2 years ago, the unhappiness slipped away. Against the advice of my family, I drove to Boston, found an apartment, and an internship in one weekend, and met the love of my life. This move was all based on the feeling that Boston was the place I needed to be. I fit in well because I could talk to people about quantum physics and current issues, and have people eagerly teach me more than I could possibly understand, rather than think I’m weird.
  4. If one way doesn’t work, don’t linger on the frustration of a broken road. Find a better way.
  5. Study with people who are smarter than you and sit next to the nicest person in class.
  6. A great idea implemented in an effective way will always trump prestige and superficial qualities that seem out of reach for those on the spectrum. Your mind is an asset, and if you use it properly without shame or pride, you can change the world.
  7. The best way to figure out whether someone is manipulating you or helping you is to ask yourself: Do they want something from me? People can only manipulate you if you have something they want. Special educators sometimes neglect the needs of high-functioning autism in order to retain disability funds.
  8. Finding who you are is a continuous journey, not a specific event that happens. It frustrates me how adolescence is deemed a time of searching for identity, because it implies that becoming an adult means you know every aspect of who you are. That’s a bunch of Bologna. I’ve met people of all ages who vary in behavioral patterns and world views. Accept, understand, and utilize your strengths as they are at this moment, and use a growth mindset to improve yourself.
  9. The easiest way to interact with someone who thinks and feel differently then you do is to ask them questions.
  10. In a debate, argument, or conflict, always validate the opposing persons view before stating your own view.
  11. When in doubt, Google. When googling, question the reliability and truth of everything. Look at the people who make claims, and ask yourself if they have a sufficient amount of knowledge to make such a claim. The more proactive you are in your education, the less you have to rely on others for answers. You can find all laws, licenses, addresses, and criminal records within a simple click. This is something you should do in regards to everyone involved in providing accommodations for you such as counselors, doctors, and tutors.
  12. Social media is not a substitute for in person interaction. Social skills like table manners or looking someone in the eye when you shake their hand are invaluable.
  13. Don’t take advice from hypocrites. For example, don’t take relationship and marriage advice from someone whose had 3 marriages end in divorce.
  14. Vaccines do not cause autism. This study was published by a scientist who was jaded by his funding sources, and falsified his data in order to get published. The journal that published his research revoked the paper, and denounced its validity after learning the truth of his research methods.
  15. Firm and non-flexible opinions stunt intellectual growth and stifle your own truth. Research all sides of one issue before deciding for yourself.
  16. Make choices that bring you closer to your goals, not based simply on what you feel. Mastering this habit will help you overcome lethargy, anhedonia, and other symptoms of depression and social anxiety associated with Aspergers.
  17. People are just people. No matter what it may seem, the most seemingly superficial or flawless of individuals have imperfections and insecurities. The success of a person is determined by how they deal with their imperfections and insecurities, not the existence of them. Everyone has their weaknesses, some people are just better at hiding it than others.
  18. The energy you put in will be returned to you. Say positive things to yourself and surround yourself with positive people even if you don’t feel it, because it will make your surroundings positive and supportive to who you are. You might have to boot out some psycho family members or close friends if they are creating more negative emotions than positive, but trust me it’s worth it. Be brave, set those boundaries so you and others can be inspired to improve.
  19. The easiest way to affect an individual’s first impression of you is with make up, hair, clothes,and body posture. Changing facial expression, tone, and word choice take a lot more work. Hair and makeup never came naturally to me and I didn’t start learning how to use them until I went to college. Pinterest has lots of simple tutorials. Because of sensory issues, I only wear makeup for special events.
  20. People are not divided into two categories of “weird” and “normal”. Everyone exists on a spectrum.
  21. Go out of your way to figure out what aspects of yourself you can improve on, and which ones you can’t. Love every part of yourself either way.
  22. There is never any need to be mean. Being nice does not equate to being a pushover and you can always present constructive criticism in a respectful manner.
  23. Keep firm boundaries in the work place. Your personal and private life are better left separate. If you don’t believe me, try bringing up your aunt’s kidney stone as a casual conversation and tell me how it goes.

I send all my love and support to all of you reading this post.
-Alix

Does My Child Have Asperger Syndrome?

Informal Childhood Developmental Checklist

Our son has Asperger Syndrome. To get the diagnosis didn’t come easy and the path to that diagnosis was rocky to say the least. That was over 12 years ago and still, the following checklist we received from our school district is the best heads-up to having Aspergers Syndrome that I’ve seen to date. It cuts to the chase. Though only meant as a ‘checklist’ remember this is not an official document and only mean’t to flag a strong suspicion of Aspergers Syndrome. A doctor or trained therapist would need to make that call, however; if you are looking for a guideline of sorts….it doesn’t get much better or black and white than the form below. It was spot on for us describing our son Sam. We’ve also put it in a downloadable format at the bottom. May it lead you towards illumination! -Jennifer Allen/Aspergers101

Samuel Allen/Aspergers101 Spokesperson

Informal Childhood Developmental Checklist

Social Interactions

Yes      No

____    ____       The child prefers to play alone.

____    ____           The child is rarely invited by others to play in the neighborhood or to participate in activities outside of school.

____    ____           The child’s social interactions and responses are immature, not keeping with his/her age or his/her cognitive abilities in other areas.

____   ____            The child has difficulty interacting in group settings.

____   ____            The child does not play with other children as expected: he/she may not appear interested in their games, or may not know how to join in.

____   ____            The child appears to be vulnerable to teasing, bullying and being taken advantage of by others.

Behavioral Observations

Yes      No

___      ___            The child has difficulty understanding the effect his/her behavior has on others.

___     ____            The child has a significant amount of difficulty taking the perspective of another person, even when it is explained to them.

____   ____            The student has overwhelmingly limited interests in things such as video games, superheroes, cartoon characters.

What to Know When Coworking With Someone With Autism

by: Dave Gentry

Never forget to pump a handshake three times- not one, and definitely not five.Seen from an autistic perspective, the social, shared, and flexible attributes of the modern shared office can be intimidating. As work and life spill into each other, they clash with coping mechanisms for autism spectrum disorder, in which high-level functioning depends on adherence to routine, scripts, and schedules. Despite this challenge, autistic professionals can have precious attributes, and demand better understanding of the relationship between the workplace and this complicated disorder.

“If you’ve met one person with Asperger’s syndrome, then you’ve met one person with Asperger’s syndrome.” In the same circles where this quote is famous, its author is a bit of a celebrity. Dr. Stephen Shore is a professor of Special Education at Adelphi University who has devoted his life to teaching and researching autism. He also has Asperger’s syndrome, a high-functioning subtype of autism spectrum disorder characterized by obsessive interest and poor social skills. “I wouldn’t use the phrase ‘Asperger’s sufferer,’ because some of us enjoy the way our mind works.”

Interview

The symptom affects how people behave, socialize, and communicate, and its acceptance in the workplace is “uneven.” Some employers avoid the issue, others embrace it, and others are seeking out people with ASD because some of their traits make good business sense. While genius is somewhat rare, a common affinity for routines can translate well to the work force. “They can be efficient, and have very low absentee rates.” TV and movies have introduced more savants whose quirky idiosyncrasies suggest autism, but Dr. Shore knows the reality is often different. “It’s all well and good that organizations are seeking IT people, but it’s a low percentage. We’re not all geeks with superpowers in IT.”

Resources for Parents About Bullying and Autism in School

Bullying and Autism is an issue that comes up often for parents of children on the spectrum throughout elementary, middle, and high school. Individuals with an Autism Spectrum Disorder (ASD) remain highly vulnerable to bullying behavior. Parents, teachers, other students, and the community must be sensitive to the particular needs of these students and vigilant in bullying prevention and intervention.

This week’s blog will point families in the direction of multiple resources available.

This first resource is quite extensive and provides a comprehensive view of bullying:

“Eyes on Bullying . . . What Can You Do? A toolkit to prevent bullying in children’s lives” 

www.eyesonbullying.org

The following are excerpts from this useful manual:

Bullying Basics

We now know that:

  • Bullying is NOT pre-wired, harmless, or inevitable
  • Bullying IS learned, harmful, and controllable
  • Bullying SPREADS if supported or left unchecked
  • Bullying INVOLVES everyone—bullies, victims, and bystanders
  • Bullying CAN BE effectively stopped or entirely prevented

Beginning in the preschool years, adults can teach children important bullying prevention skills and guide children as they practice using these skills. Social skills that form an important foundation for bullying prevention include:

  • Showing empathy toward others
  • Interacting assertively
  • Solving social problems

Bystanders also have the power to play a key role in preventing or stopping bullying.

Some bystanders… directly intervene, by discouraging the bully, defending the victim, or redirecting the situation away from bullying.

Other bystanders… get help, by rallying support from peers to stand up against bullying or by reporting the bullying to adults. Look Around…Who Is Involved?

Bystanders’ actions make a critical difference. Children and adults should think ahead about what they will do when they witness or hear about bullying.

There is also an Information Sheet on Bully Prevention at the following website:

Choices in Education

Considerations for the Student Diagnosed with Autism/Asperger Syndrome

Most children with Autism or Asperger Syndrome attend their local public school. There they get additional services like special instruction, either in the classroom or in a separate room. Or they might get special accommodations, such as extra time on tests.

But for some parents, the discovery of their children’s learning issue triggers a much broader journey. In addition to advocating for the best possible services from the school their child attends, they may carry out an exhaustive school search, switch between schools within a district, commute to another district, or even move to a different state. In some cases, parents hire education consultants or advocates to help them find the best solutions for their child. In the most extreme cases, they hire lawyers to sue districts or states to help them pay tuition for specialized private schools.

Knowing how much energy, time, and resources you can or want to invest in this process is a very personal decision, but it’s helpful at the outset to understand the range of educational options that many regions have. Special education funding varies by state and children living in isolated rural areas usually have fewer options than those living near large populations.

What the Law Requires of Your School District

If you live in the United States, the Individuals with Disabilities Education Act (IDEA) requires that your district provide the “Least Restrictive Environment” for your child’s education. That means that they must consider such options as mainstreaming before deciding (with your involvement) on a more specialized setting.

You may, of course, decide that your child is better off in a specialized setting but if you decide to work with public schools, you may have to prove that the mainstream setting is not working before seeking funding for a private or specialized setting.

Below is a broad overview at the following educational options:

  • Public School    
  • Private School
  • Homeschool      
  • Charter School

Public School

Autistic support classrooms have several great advantages: they are usually very small, with a high adult to child ratio. They offer supports, such as visual teaching tools, which are specifically selected for autistic students. And they may also include intensive speech and social skills training in their curriculum. Autistic support classrooms, however, tend to be quite segregated from the rest of the school. It’s not unusual for teachers of children with autism have lowered expectations of their students’ intellectual abilities.

Pros:

  • Challenges to excel
  • Social skills learned by observation
  • Real-world environment that teaches life skills
  • Prepares them for diversity critical for future neighbors & co-workers

  Cons:

  • Teacher lacks specialized training
  • Budgetary restrictions – less attention