Misunderstood and Misconstrued; That is the Real Crime

Woman Upset on Phone

Aspergers and other forms of Autism were once thought to disappear once a child reached adulthood, but now experts are discovering that’s not so. Many people reaching the age of majority who were diagnosed as children who may have had services while growing up and an increasing number of undiagnosed Autistics have now “aged out” of the social service system and find themselves at a loss as to how to fully function in society.

Quiet shy woman

While Autism exists on a spectrum with each individual presenting differently in both strengths and defecits, there are certain traits that people with this condition generally have in common;

* Difficulty in reading social cues from others in their environment.

* Difficulty in communicating their thoughts, feelings, and intentions to others in a form others can understand.

* Trouble in processing and making sense of the world around them.

Doing the math

* To some degree feeling uncomfortable making eye contact.

Woman Not Wanting Eye Contact

* May have sensory issues, and some don’t like being touched, certain tastes, textures, sounds, and/or smells.

Girl Putting The Puzzle Together

* Literal thinking and impairment in one’s ability to decipher sarcasm, lying, disingenuousness, deception, trickery, two-faced behavior, and in some instances out-and-out meanness.

Pensive girl

* Tend to take people at face value.

Hopes and Dreams

* A strong moral sense of honesty, right and wrong, and justice.

Anger

* May come across as odd or accentric.

Accentric Older Woman Cooking

* May have trouble regulating emotions (either appears emotionless as in showing lack of affect in voice or facial expression, and/or the opposite may present itself in that the person may get very upset at times).

Emotional pain

* May have inflexibility in changing one’s routine.

*May have very specific and sometimes narrow interests that are focused on very intently, and difficulty “switching gears” to transition from doing those activities to doing other activities.

Woman Photographer

* May speak long-windedly and circuitously especially about those topics that interest him/her, often unaware of when others lose interest.

* Difficulty conceptualizing opinions widely divergent from their own (once believed to be a lack of empathy, but now recognized as difficulty with a particular type of abstract thinking).

*Repetitive behaviors; known as “stimming”(some of which have the function of self-soothing).

*Co-morbid conditions can include ADD/ADHD, Anxiety and/or Depression (usually situational), sometimes Obsessive-Compulsive Disorder, and more recently a variety of medical conditions are recognized as being associated with Autism such as GI conditions, Dysautonomia, allergies, Multiple Chemical Sensitivity, Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and other Autoimmune Diseases.

*Often these individuals are vulnerable to bullying by not-so-nice people who pick up on the fact that something is different about them and take advantage of their “blind spots.” This does not only happen to children in school settings, but can happen to adults also in the workplace, the community at large, and even in healthcare settings.

Devastation

There are a growing number of cases documented of abuse and/or neglect in ERs and in other hospital settings. Staff often lack the training and patience necessary to accommodate such populations and therefore handle the situation very badly.

Treatment or Healing

(Note that these symptoms in people with Autism often become worse when they are hungry, thirsty, or have medical issues that are not addressed in a timely manner. This is why it is especially important to pay attention to these clues and take them seriously. They are not a sign of mental illness nor of the individulal just being “difficult” nor are they a defect of character, but indicate that something is legitimately wrong that needs addressed ASAP).

Medical doctor in white coat

It was once believed by experts that boys were affected at a 4:1 ratio to girls, though some believe the ratio is actually 16:1, more recent data suggests that the accurate statistic is likely 2:1 (male to female) or may be even more evenly matched between the genders.

Dr. Judith Gould of the Lorna Wing Center and Center for Social and Communication Disorders believes that current statistics about the prevalence of girls with Aspergers are under-representative citing a 2.5:1 ratio.

Tania Marshall did her docturate in Asperger’s in females, has published a number of books on the subject, and is currently practicing in this sub-specialty. She has found that it’s quite common for girls to fly under the radar until at least secondary school when communication and interaction among girls becomes more emotionally-based and a social hierarchy begins to develop. Females are better at concealing it and emulating those behaviors that are socially acceptable (referred to as masking).

Masks

For those adult women on the spectrum who are now in their 40s and 50s virtually no diagnosis of girls existed in the 1960s and 1970s when females of this age were children, so many women are just now obtaining official diagnosis and having to make up for a lifetime of struggle, misunderstanding, and riducule from those who mistake their condition for something else.

Back in those days nobody believed that girls could have Autism, so other euphemisms were used in lieu of official diagnosis when they were taken to neurologists and/or neuropsych tested. (I have miraculously managed to keep a report I had when I was tested at age 5). 

This is in effect what happened to me. Neurologists have been telling me for years between the lines with statements such as “Your brain is wired differently” and “Your brain’s not hooked up quite right” and when I asked what I could do about it they were at a complete loss as to what to tell me.

In those days there really were no effective interventions or coping mechanisms. With all the stigma attatched and ignorant people out there confusing Autism with mental retardation, I really didn’t want to “go there” having been given the message that this was a family secret that shouldn’t be explored any further and was better left alone. I pushed it to the back of my mind telling myself it must not be true because all the media images of Autistic people were of children wildly out of control and non-verbal 24/7, 365 days of the year. That was not what I was like, but I had some of those problems at one time or another under certain circumstances and alot of the other quirks I had and still have I didn’t know were actually indicative of it.

When things went South at school due to my inability to focus my parents just switched me to a different school to avoid the inevitable questions that would ensue.

Throughout my educational years I was luckier than most in that I didn’t run into much bullying except for at a new private school in 5th and 6th grade in which the girls were especially snooty.

Trapped

Then in high school I just tried to remain as invisible as I could and other than appearing a bit shy, nerdy, and separate, nobody really suspected nor bothered me.

Sporty Academic Woman

I really thought this was something I would take to my grave as I figured things couldn’t get any worse with my just going on with my life and I was used to coping the best I could. It worked fairly well for awhile and I managed to “pass” except for a period mostly in my late teens and 20s when it was mistaken for other problems for which neither therapy nor medication did much good.

Been there, done that, so thanks but no thanks in case anybody’s thinking of suggesting that, LOL. Good old Dr. H. was and he couldn’t have been more off-target. I received some highly disorganized medical records in the mail at the end of last week which included doctor’s notes.

He and Dr. V’s Nurse Practitioner both floored me with their outlandish interpretation of what was going on with me medically; cynical verbiage that I won’t even dignify here because it is so judgmental and unkind that it’s unbefitting anyone who calls themselves a”medical professional.”

Crucified

Dr. V’s first entry was pretty bad too, but she seemed as best as I can tell to reverse her opinion once more data became available about my Dysautonomia and I had a chance to disclose to her about the AS. (She did officially diagnose my Dysautonomia after our last visit on June 3rd, by the way, so that’s progress).

I’m pretty sure she’d just automatically gone into the first visit with a bias from what The Dark Man had charted. Even though she’d changed her mind later, it really scares me how easily influenced these doctors are to think the worst of a patient.

It appears that Dr. T steered clear of the pile-on and kept her notes constructive; good woman! ♥

Thumbs Up

These other people were in actuality seeing symptoms of my Aspergers and charting tidbits about my little quirks here and there and interpreting and/or knowingly misconstruing those traits as something almost willful on my part, poking and prodding at it as one would bat at a pinata!

Jester

Now I know why they were treating me like some sort of criminal or dangerous individual to be feared and loathed.

Misconstrued as not human

Such is prejudice in its ugliest of forms. And now it all makes sense why the spin they put on it is so ego-dystonic to me, because not only were they proposing something I don’t have in me, but it’s the very antithesis of who I am.

Dirty Rat Creeping In The Dark

It is they who are dishonest and have duped me into believing they were actually trying to help me, smiling and pretending to like me and creating this ruse of positive relationship that I was unable to see through because of my Aspergers!

Corporate hiding behind

I find myself now unable to trust another doctor and I don’t know if I will ever be able to, at least not for a long time, because how can I trust when people are being genuine when they can so easily lie to me with a straight face? How can I know that they won’t write these terrible things again that are so untrue and unfair about me?

Girl Covering Face

When I became really ill with the most recent illnesses, the protracted suffering and stress due to the institutional bullying, slow-down, and stoppage of care that I was subjected to over the past year (especially the past 7 months) caused my AS to become much more obvious.

Crying - close up

I am now at a stage in which I don’t think I can put the Genie back in the bottle. Now there is one more problem that I need to do something about and find services for soon. Try finding services for a 55 year old adult woman in Georgia on Medicare. It’s not easy, and in fact nearly impossible.

Elder Woman Holding Face in Hand

Because of what’s happened at Emory it is no longer stable and manageable and I’m pretty sure this destabilization is permanent. People have no idea what I’m dealing with at home.

You Don't Know

Now that I’ve decided to come out publicly I am trying to embrace it as best I can and use the positive aspects of it with which to cope. Although I didn’t want to open up this can of worms initially I am trying now to make lemonade from these lemons and educate the public so that this won’t happen to others who have to go to the doctor for some medical problem and risk falling victim to such atrocity. Maybe others can learn from my process and together we can make the world a safer place.

In 2013 A UK study published in the medical journal “Brain” began uncovering the differences between males and females who have Autism, not only in how they present symptom-wise, but in terms of brain structure.

The Cambridge research published in this esteemed neurological journal used MRI (Magnetic Resonance Imaging) to compare males with and without Autism, and females with and without Autism.

Light-bulb Moment

What they discovered is that overall, males had greater tissue volume, but that females’ brains with Autism more closely approximated the male brain than did Neurotypical females (those without Autism).

However, males with and without Autism did not show structural differences from one another.

Sadness and Shyness

A growing number of experts feel that testing remains behind the times, having been devised to detect Autism in males and that this may account for the under-diagnosis of females on the spectrum.

Many females present with symptoms often mistaken for mental health conditions such as eating disorders, drug abuse, etc…

Women with this brain orientation come from all walks of life. Some are unemployed,

Woman Looking Away

some are professionals,

Health Professional Woman

some are single,

Stay Weird T-shirt

and others are married and/or with children.

Mother with child

They come with all different combinations of skills and challenges. Some look obvious and others, you’d never know unless they told you.

Despite the fact that adult services remain hard to access, there is hope in that more research is being done with adults, and more is being learned about how to cope with it in addition to a growing advocacy movement by and for people with Autism. I will leave you with this beautiful music video by a fellow Aspie woman. Her voice is absolutely lovely. Please share and raise her up.

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6 thoughts on “Misunderstood and Misconstrued; That is the Real Crime

    • Thanks for your comment. 🙂 You are so right, and in addition to the doctors, what the Nurse Practitioner wrote was absolutely heinous! These people were making fun of me behind my back and a few of them even sneered and laughed at me to my face. That was the first inkling I had that something was going on that I wasn’t privy to. They just kept spreading vicious lies from one to another and it snowballed before I knew what was happening. Never did they ask ME what these things were that they were reacting to or didn’t understand. All of a sudden I was being treated as incompetent and irrelevent and they didn’t even have the decency to fully tell me why.

      I was very clear and direct with my PCP at Emory that I need full explanations and that he cannot give me partial ones, not refuse to answer my direct questions, nor force me to clarify numerous times, and expect me to read between the lines. These were reasonable accommodations to ask for and in no way did they place an undue burden upon him nor the corporation. Full disclosure was not provided me even after I said that to him.

      If the PCP and pulmonologist there had read the note to me verbatim that had influenced them I would have realized why they had turned on me like that, but what they told me was much milder and more innocuous than what had actually been written. Even so, those two of all the doctors should have known better than to believe the BS written by doctors who didn’t even know me. They had the option not to participate in the personal attack but instead jumped on the bandwagon. They also had the duty to protect me when they saw that other doctors were acting in an unprofessional manner and report it. Instead they just sat there and did nothing, said nothing.

      I now have to figure out how the hell I can get my testing and treatment back on track for my other neuro disorders (that I was seeing them for in the first place) despite this minefield of poisoned medical records. Anybody who simplistically believes one can “just go someplace else” after something major like this happens is incredibly naive.

      I really believe that patients should have full access to ALL their electronic records and there should be strict requirements about what can and can’t be charted. Wild speculation about a patient should not be allowed. Doctors and other healthcare “professionals” that abuse that privilege should be subject to very serious penalties with teeth in them and those should be enforced every time it happens. Maybe then they wouldn’t do it anymore if the consequences were strong enough. They should never be allowed to torment a patient this way and undermine their very credibility on which their life may depend.

      Like

    • Thanks for your comment! Know that you are not alone. 🙂

      Together we can fight the prejudice that persists in the medical system and with enough people organizing around this issue, hopefully see an end to it in our lifetime. That is my mission if it’s the last thing I do!

      For every person who is “out” openly I bet there are tons of people who have had this experience and are either too afraid or don’t have enough self-confidence to speak out.

      We need to send the collective message that we’re not shutting up and we’re not going away!

      Like

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