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!
“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!
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.”
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.
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.
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.
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.
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.
Depression is more frequent in those with AS than the general population, and the struggles of those with AS often contribute to the development of depression. The obvious question is, what resources are available and what do we do? First, we should not accept depression as just a normal part of AS, especially if it’s interfering with everyday life. Secondly, we need to recognize the symptoms to help as early as possible. And lastly, we need to research the supports that are available – how you can help yourself or others right now – and what resources still need much improvement so that you can call upon action in your community.
Being aware of the symptoms of depression is critical:
sleep difficulties, either sleeping more or less (insomnia, early morning waking);
changes in appetite (either more or less hunger);
weight gain or loss;
a failure to enjoy normal sources of pleasure;
sadness, guilt or hopelessness;
crying or unusual irritability.
Someone who is clinically depressed sees the world in the above ways each day. It’s important for the individual or those around to seek professional help.
Medication can help many with depression, as can Cognitive Behavioral Therapy. Although CBT is a slower process with AS individuals and needs to be adapted to their thought process. Some studies suggest neurobiofeedback can be helpful with depression and there are a few early studies of its use with ASD patients. For those who prefer to avoid medication, this is certainly worth exploring. It is best to come to your medical sessions with the knowledge of various treatments so that you can be prepared to discuss what is best for you.
It’s important to think about addressing the factors that can result in depression.
It is said that 40 million Americans live with an anxiety disorder, which is more than the occasional worry or fear. We all experience anxiety to some level. Anxiety in children is common when separated from their parents or from familiar surroundings. However there is a type of anxiety that is more severe and may be misdiagnosed. Anxiety left unchecked or treatment may become paralyzing to everyday life.
Below we’ve gathered several lists for you. What does anxiety look like? How can it manifest, when is it critical to consult a doctor and what methods are available to self calm. Here we go….
Often, anxiety disorders involve repeated episodes of sudden feelings of intense anxiety and fear or terror that reach a peak within minutes (panic attacks). These feelings of anxiety and panic interfere with daily activities, are difficult to control, are out of proportion to the actual danger and can last a long time. You may avoid places or situations to prevent these feelings. Symptoms may start during childhood or the teen years and continue into adulthood.
Examples of anxiety disorders include generalized anxiety disorder, social anxiety disorder (social phobia), specific phobias and separation anxiety disorder. You can have more than one anxiety disorder. Sometimes anxiety results from a medical condition that needs treatment.
According to research from the Mayo Clinic, several types of anxiety disorders exist:
Agoraphobia (ag-uh-ruh-FOE-be-uh) is a type of anxiety disorder in which you fear and often avoid places or situations that might cause you to panic and make you feel trapped, helpless or embarrassed.
Anxiety disorder due to a medical condition includes symptoms of intense anxiety or panic that are directly caused by a physical health problem.
Generalized anxiety disorder includes persistent and excessive anxiety and worry about activities or events — even ordinary, routine issues. The worry is out of proportion to the actual circumstance, is difficult to control and affects how you feel physically. It often occurs along with other anxiety disorders or depression.
Panic disorder involves repeated episodes of sudden feelings of intense anxiety and fear or terror that reach a peak within minutes (panic attacks). You may have feelings of impending doom, shortness of breath, chest pain, or a rapid, fluttering or pounding heart (heart palpitations). These panic attacks may lead to worrying about them happening again or avoiding situations in which they’ve occurred.
Selective mutism is a consistent failure of children to speak in certain situations, such as school, even when they can speak in other situations, such as at home with close family members. This can interfere with school, work and social functioning.
Separation anxiety disorder is a childhood disorder characterized by anxiety that’s excessive for the child’s developmental level and related to separation from parents or others who have parental roles.
Social anxiety disorder (social phobia) involves high levels of anxiety, fear and avoidance of social situations due to feelings of embarrassment, self-consciousness and concern about being judged or viewed negatively by others.
Specific phobias are characterized by major anxiety when you’re exposed to a specific object or situation and a desire to avoid it. Phobias provoke panic attacks in some people.
Substance-induced anxiety disorder is characterized by symptoms of intense anxiety or panic that are a direct result of misusing drugs, taking medications, being exposed to a toxic substance or withdrawal from drugs.
Other specified anxiety disorder and unspecified anxiety disorder are terms for anxiety or phobias that don’t meet the exact criteria for any other anxiety disorders but are significant enough to be distressing and disruptive.
Parents should be alerted to the signs so they can intervene early to prevent lifelong complications. The American Academy of Child & Adolescent Psychiatry offers you different types of anxiety in children.
Symptoms of separation anxiety include:
• constant thoughts and intense fears about the safety of parents and caretakers
• refusing to go to school
• frequent stomachaches and other physical complaints
• extreme worries about sleeping away from home
• being overly clingy
• panic or tantrums at times of separation from parents
Depression is most common in adolescents and young adults with Asperger’s, and particularly in those with stronger intellectual and verbal skills. That means college students with Asperger’s are at a very high risk for depression. This is particularly true for freshmen, who are transitioning to the college experience. Although I’ve seen this in later years as well when students are dealing with more challenging classes, social issues, and upcoming graduation as triggers.
Let me tell you about one college student’s experience with depression:
Franklin went off to a good college based on his excellent academics in high school. However, he’d been provided with executive function scaffolding all through high school. His parents and a teacher had helped him organize his time and initiate his work. The school counselor and his parents had feedback from teachers if he was falling behind on assignments.
In college, he was on his own.
He was supposed to check in with the disability office, but he resisted being seen as needing help. Franklin had challenging classes and had taken on a very full load of five classes; he had always set his standards and expectations of himself very high. Franklin began falling behind in writing papers for his English literature class because writing was difficult and he wrote slowly. His effort was going into writing, so he fell behind on the reading. He tended to procrastinate as the pile of work grew. Franklin was embarrassed at being behind, so he stopped going to English. He also was stressed by feeling at a loss in terms of the 24/7 social demands.
As you might expect, all of this stress was a trigger for depression. In Franklin’s mind, one was either a success or a failure, and he was a complete failure.
With your summer all wrapped up, I hope you’re off to a strong fall. Speaking of fall – I couldn’t resist – are you or your family struggling? Struggling is part of being human – you’re not alone. Do you crave strategies to move past your challenges? Of course you do so let’s start with a quick definition.
What’s your #1 struggle right now?
Is it… *Never getting it all done? *Pesky thoughts nagging at you – are you doing enough? *Living in fight or flight stress? *Repeat offenders – facing the same problems over and over again? *Wishing there was another way – but not being able to see it?
What if there’s a solution right there in the struggle? It’s completely possible and just waiting for you. I say, whatever your struggle, let’s discover the way out.
You may be thinking, that’s great for other people, but not me and my family. Raising kids is no joke. It’s hard work. It involves all the things. Raising a kid on the spectrum is all the things on steroids! I’ve come to know this full on truth from every “steroid living” parent and youth.
Since they were little, you’ve been inundated with every conceivable intervention, strategy, advice, philosophy, educational approach and on it goes. They’ve been your lifeline and your achilles heel. Since we know society is on information overload it only makes sense that you, “steroid parent,”have been taxed beyond measure. I’m not pedaling snake oil or quick fixes. I don’t pretend to know what your days really look like and feel like day – after – day.
What I’m offering is a slight shift.A click on your mental and heart dial. If you’re open to a shift in your perspective, it can hold the potential for a whole new way. It’s ironic this shifting perspective deal. You know how challenging it is for your beloved child on the spectrum to shift perspective. You know the huge strain that creates. You even know how to shift around their lack of shifting.
In some ways this ability has saved your sanity. In other ways it’s been unknowingly perpetuating your frustration. You’ve learned to anticipate the needs, reactions, and overall experience within seconds. With this, you’ve got to be exhausted. It’s draining to have to figure it all out – all the time. That creates pressure. And nobody has their full set of resources (their best thinking) available while living in constant pressure.