Category Archives: Actually Autistic

Trauma Does Not Define You

In Greek, trauma means “wound”. Originally trauma referred to physical wounds, but nowadays trauma also refers to emotional wounds. The psychological reaction to emotional trauma also has a name.  It is more often referred to as post-traumatic stress disorder, or PTSD.  I am very familiar with PTSD.  I was diagnosed with it about 14 years ago. This original diagnosis arose from a horrible medical trauma that I endured and also from the behavior of those closest to me at the time.  Since then, my diagnosis has changed to Complex-PTSD due to what I have come to realize were years of emotional and mental abuse at the hands of my ex-husband and what I endured as a child growing up.  I married what I knew. 

Growing up in a household where verbal and emotional abuses were tolerated really confused my autistic brain. I was told I was loved, and I believed it, but the behavior was not what you do to people you love. As a teacher, I learned the phrase, “at least he is not hitting me”, is a red flag that something is very wrong.  I heard that phrase over and over again growing up.  I was taught to comply, to make excuses.  I was conditioned to be a codependent.  Talking about any of this outside and inside the family was and still is discouraged.  I knew something was off with my family, but I didn’t know what it was.  It just felt uncomfortable.  Yet, I still married what I knew.   

Emotional abuse is insidious. It starts slow and under the radar.  You have no idea what is really happening, only that something doesn’t feel quite right.  The perpetrator may even pull back and be charming again when you call them out on something.  Everything might seem perfectly fine again, but over time that uncomfortable feeling starts up again and it gets worse and worse each time.  It is incredibly confusing.  Before you know it, you find yourself trapped telling yourself that you just have to wait for him to cycle back to being the man you married.  This is what is called the cycle of abuse.  You find yourself holding out for the good times to come back, and that is the perpetrator’s biggest weapon, playing on your hope. You find yourself holding on for something that will never come, real peace and real love.   

As a child, I would wait out the aggressive verbal outbursts and the passive aggressive manipulation until we could feel like a family again.  While growing up, I had no idea I was in this perpetual state of fight or flight. I was always on edge and preferred to be in my bedroom.  Now I understand why I did isolated myself, but back then, that was my “normal” and it was exhausting and frightening.  As a spouse, I did the same thing. I waited out the passive aggressive emotional abuse until the good times returned.  I married what I knew.

According to SAMHSA, adverse childhood experiences (ACEs) are stressful or traumatic events, including abuse and neglect. These experiences may also include household dysfunction such as witnessing domestic violence or growing up with family members who have substance use disorders. Having your ACEs score is like having your cholesterol score.  The score is a guideline to help you learn your risk factors for particular things. 

How childhood trauma affects health across a lifetime | Nadine Burke Harris (TEDtalk – video)

Childhood trauma isn’t something you just get over as you grow up. Pediatrician Nadine Burke Harris explains that the repeated stress of abuse, neglect and parents struggling with mental health or substance abuse issues has real, tangible effects on the development of the brain. This unfolds across a lifetime, to the point where those who’ve experienced high levels of trauma are at triple the risk for heart disease and lung cancer. An impassioned plea for pediatric medicine to confront the prevention and treatment of trauma, head-on.ACEs Impact

The Impact

ACEs scores are strongly related to the development and prevalence of a wide range of health problems throughout a person’s lifespan, including those associated with substance abuse.

ACEs include:

  • Physical abuse
  • Sexual abuse
  • Emotional abuse
  • Physical neglect
  • Emotional neglect
  • Intimate partner violence
  • Mother treated violently
  • Substance misuse within household
  • Household mental illness
  • Parental separation or divorce
  • Incarcerated household member

The ACEs study used the top ten reported adverse childhood experiences when designing the questionnaire, which consists of ten questions and involves your life prior to 18 years old.  Five questions are personal — physical abuse, verbal abuse, sexual abuse, physical neglect, and emotional neglect. Five questions are related to other family members: a parent who’s an alcoholic, a mother who’s a victim of domestic violence, a family member in jail, a family member diagnosed with a mental illness, and the disappearance of a parent through divorce, death or abandonment. Each type of trauma counts as one.

I went through the questionnaire  and had a score of 3/10. I had both my children take the questionnaire as well.  Their scores varied.  My daughter had a score of 8/10.  My son first had a score of 4/10, but then he adjusted some of the questions to reflect one parent, his father, and he ended up with a score of 6/10.  I knew their scored would be higher than mine.  They have dealt with a divorce and a father who emotionally neglected them and emotionally abused their mother.  Even with that, learning their scores punched me in the gut. 

I reminded them that their trauma does not define them. Trauma can affect yourself-definition either consciously or unconsciously. Trauma hurts, and as hard as it is to grieve, trauma is not who you are. Your ACEs score is not what is wrong with you; rather it reflects what has happened to you. Just as trauma does not define you, your ACEs score does not define you.  What makes the difference is getting help and developing resilience. 

Prevent ACEs

We Can Prevent ACEs – Video by Centers for Disease Control and Prevention (CDC)

Childhood experiences, both positive and negative, have a tremendous impact on future violence victimization and perpetration, and lifelong health and opportunity. As such, adverse childhood experiences (ACEs) are an important public health issue. Learn how everyone can help prevent ACEs by using strategies to create safe, stable, nurturing relationships and environments for all children.

Part of healing from trauma is stating what happened. It is important to share your story in whatever way you are able to, but being able to takes time.

A few days ago in the car, one of my children stated, “Dad committed acts of domestic violence.”

This was the first time either one of them has used the term “domestic violence” in connection with their father. My marriage ended six years ago.

Finally being able to share this information out loud with me meant one step farther away from the trauma and one step closer to healing.

Where do we go from here?

  • There is no time limit on grief.
  • Everyone grieves differently.
  • Don’t let trauma consume you. Don’t live there.
  • No wallowing!
  • Get help!
  • Strive to heal.
  • Obtain and utilize healthy coping skills.
  • Do what makes you feel good in a healthy way.
  • Reduce risk factors.
  • Increase protective factors
  • Get involved in community.
  • Talk to someone.
  • Educate yourself.
  • Find what makes you feel your true self.
  • Most of all – Be gentle to yourself!!!

 

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Talking About Mental Illness – Society Needs to do Better

Content Warning: Suicide and suicide thoughts.

Whenever a celebrity or well-known person commits suicide, suicide hotline information is plastered all over social media. 

Feeling depressed? Reach out! Call this number!

Know someone showing these signs? Reach out!

I am not disparaging the need for these types of hotlines.  Many people can find help through them. In 2015, John Draper (PhD, Director, National Suicide Prevention Lifeline Member, SPRC Steering Committee) reported that in the ten years since the Lifeline began, their centers have answered more than five million calls from people in suicidal or emotional crisis.  

National Suicide Prevention Lifeline – 1-800-273-8255 or Chat

En Español – Nacional de Prevención del Suicidio – 1-888-628-9454

For Deaf & Hard of Hearing  1-800-799-4889

The problem is, how many people didn’t or won’t call? How many children and adults don’t call and continued to suffer in silence, because the people they did reach out to dismissed them or they didn’t feel safe enough to reach out at all? How many kept silent, because they didn’t know what to say, didn’t want to burden their families, or because they were raised not to say anything at all?

According to the CDC, in 2016, nearly 45,000 Americans age 10 or older died by suicide. Yes, as young as 10 years old. Suicide is considered the 10th leading cause of death and is one of just three leading causes that are on the rise.  Researchers also found that more than half of people who died by suicide did not have a known diagnosed mental health condition at the time of death.

According to The State of Mental Health in America, 1 in 5 Adults have a mental health condition. That’s over 40 million Americans; more than the populations of New York and Florida combined. Youth mental health is worsening. Rates of youth with severe depression increased from 5.9% in 2012 to 8.2% in 2015. Even with severe depression, 76% of youth are left with no or insufficient treatment.

From the Anxiety and Depression Association of America, ADAA:

“Anxiety and depression are treatable, but 80 percent of kids with a diagnosable anxiety disorder and 60 percent of kids with diagnosable depression are not getting treatment, according to the 2015 Child Mind Institute Children’s Mental Health Report.”

“Anxiety disorders affect one in eight children. Research shows that untreated children with anxiety disorders are at higher risk to perform poorly in school, miss out on important social experiences, and engage in substance abuse.”

In Spokane County, Washington State, the youth suicide rate more than doubled from 2013 to 2016. It went from 4.3 per 100,000 people 24 and younger to 10.7, Washington State Department of Health data show.  It was reported that nearly 20 percent of Spokane County’s eighth, 10th or 12th graders have seriously considered suicide, according to the Spokane Regional Health District. In 2016, the last year data was publicly available, 15 percent reported that they made a plan to do so. Chris Moore, a student services coordinator with Spokane Public Schools, says suicide attempts are spiking as well, even among kids in elementary school. “We’ve seen a drastic increase with the number of attempts,” Moore says. “It’s a public health crisis. It really is.

For more information – As youth suicide rates surge in Spokane, school officials search for answers

My family has a long history with mental illness on both sides. Then there is my ex-husband’s family.  Various forms of anxiety and depression, PTSD, Bipolar, alcoholism (which is considered a mental illness according to the AMA and the APA – it’s all there based on information spanning five generations.  

For more information – Anxiety and Depression Association of America – Facts & Statistics

My sister-in-law, who I will never have the opportunity to meet, violently committed suicide with a gun when she was 21 years old, three weeks after her son was born.  He will never know his mother.  He is now older than she was when she ended her life. His father raised him on his own. 

My brother-in-law has struggled with depression all his life and has been slowly killing himself with alcohol and drugs. He is in his fifties and he doesn’t expect to outlive his parents. He can’t hold on to a regular job and lives most of the time with his parents and some of the time with his girlfriend. 

My ex-husband has also struggled with depression all his life, but has refused treatment.  His untreated mental illness and his untreated personality disorder ripped our family apart, twice.  He ran from life instead of facing his problems.  He couldn’t deal with his demons, so he pushed his family away and went into isolation with his seven guns and his paranoid ideas.

My ex-husband came from a family who doesn’t talk.  My ex was raised to believe that it was a sign of weakness to talk about your emotions and to ask for help.  Instead, he buried his demons, walled himself up, and went emotionally flat lined to the outside world. The reality is that he can’t handle his emotions, he fears them.  He is emotionally stunted, a 45 year old man emotionally stuck somewhere between a 12 year old boy and a 17 year old teenager.  Our children are actually more emotionally mature than he is.  My sister-in-law killed herself when my ex was only 17 years old and that is where he stopped growing emotionally as a person.     

My son, who is now 15 years old, was diagnosed with depression and anxiety when he was six years old.  He was diagnosed with Autism a year later.  Autism is a developmental disorder, not a mental illness.  My son was on suicide watch twice when he was 11 years old due to his father’s behavior.  My ex had fallen into a major depressive episode, the worst I had seen him be in. He refused to get help.  He neglected and then abandoned his children resulting in my son developing PTSD.  My son was never suicidal, but he had given up hope in life. He saw no point in life any more.  My son still struggles with depression.  He is on medication and goes to weekly counseling sessions. 

My daughter was diagnosed with Bipolar when she was only eight years old.  She has been on medication ever since. She was diagnosed with Autism two years later at the age of 10.  She is now 17 years old.  She was hospitalized when she was 15 years old due to going into psychosis.  She had been essentially stuck in a depressive state for some time and then had a breakthrough manic state.  The combination sent her into psychosis.  The voices told her she had to hurt herself with a knife and then the voices told her to use fire.  She never did and insisted that she could keep fighting the voices, but we managed to convince her to go to the hospital where she stayed for a week in the youth psychiatric ward.  Three months later a space opened up at a long-term treatment facility for youth.  She went into long-term care as an outpatient for three months.  Her medications were straightened out and a new treatment plan was developed for her to be used by her counselor, occupational therapist, and her speech therapist.

Then there is me.  I was diagnosed with Autism after my children were at the age of 36. 

Depression and mainly anxiety have been a part of my life for as long as I remember, but no one talked about it.  I didn’t have the words I needed to use growing up to describe why I felt the way I did.  I was told to lighten up, to stop taking things so seriously.  I was yelled at if I cried.  I was conditioned to not show emotions or to ask for help.  I was also conditioned that my needs didn’t matter.  I was on my own and told to take care of my younger sister who was only two years younger than me.  Alone, that was how I felt for so damn long.  No one listened when I tried to reach out, so I stopped reaching out.  I withdrew into myself, which only isolated me more, because my family either didn’t know what to do with me or took it personally that I had withdrawn, so I was ignored.  I was an undiagnosed autistic child with undiagnosed mental health issues. 

I grew up in a toxic home, but I didn’t realize it.  All I knew was something was off, but I never could figure it out.  I was told I was loved, but I felt so alone and I was scared.  I felt silenced.  What I wanted never seemed to matter.  I was conditioned to comply.  I had no idea how to say “no” or how to advocate for myself.  I was to comply with the wishes of others and rules were rules.

I didn’t know anything about emotional abuse until I was required to take a class for my professional certification as a teacher.  Even then, my mind just couldn’t accept that I had come from an abusive home life.  No, it couldn’t be.  There were other reasons for the behavior, always an excuse, excuses I had heard as a child growing up, excuses I was taught to just accept without question.     

By the time I took this class, I was already married and a parent.  I also hadn’t realized that I had married into an emotionally abusive marriage.  I married what I knew.

For more information – Invisible Scars – A Tale of Emotional Abuse

About 15 years ago, I went through a horrible medical trauma that was made worse by my family’s behavior.  More information can be found here – The Volcano is Awake. There was a time that I wanted to die so the pain would end, but I was never suicidal. I reached out for help so many times, but I was told get over it, bury it, move on.  I would reach out and get a cold shoulder or a back turned to me.  I had to get myself through that dark time of my life on my own and I would never wish that torture on anyone.  What got me through was that I couldn’t leave my children without a mother.  They were only a baby and a toddler at the time and something inside me kept saying that there was no one else to take care of them.  It was my responsibility as a mother that pulled me out and in the process “mama bear” emerged.  I had reached my breaking point, but never fully broke.   I became stronger, but in the process of working my way out of the darkness, I learned I had developed Complex – PTSD.  

Reach outWhen my marriage ended, I once again reached out for help, but was met with the same cold shoulders and told to move on, get over it, stuff it away. As with my medical trauma, I was not allowed to grieve in the way and for the length that I needed to.  I had become an inconvenience, a burden, again.  Once again I found myself alone with two children, teenagers now, and I had to get through the emotional pain of having my family ripped apart, but this time I was going to do things on my terms.  By this time I had learned about self-advocacy and self-determination.  I drew the line and held those boundaries. 

I reached out to others outside my family.  It took time, but I eventually developed a support network that is primarily online.  I am in a better place now, but my children and I are still grieving.  We are getting there, though.  We are much better than where we were a few years ago, but the depression is still there.  It has never fully gone away and I don’t know if it ever will. 

I have tried to create an environment where my children can feel safe talking about how they feel. I want them to feel that there is someone who will listen to them, who feels their voice is important, and who will never give them a cold shoulder and tell them to get over it and move on.  I remind them often that they each have a whole care team rooting for them.  I want them to know they are not alone.   

There is still too much stigma around mental illness. In 9 Ways to Fight Mental Health Stigma, Laura Greenstein states, “Stigma causes people to feel ashamed for something that is out of their control. Worst of all, stigma prevents people from seeking the help they need. For a group of people who already carry such a heavy burden, stigma is an unacceptable addition to their pain. And while stigma has reduced in recent years, the pace of progress has not been quick enough.” 

As a society, we need to do better.  We can’t just post about a suicide or crisis hotlines only during a time when a celebrity commits suicide.  We can’t just think posting these hotline numbers are enough. 

What is mental health stigma?

Mental health stigma can be divided into two distinct types:

  • social stigma is characterized by prejudicial attitudes and discriminating behavior directed towards individuals with mental health problems as a result of the psychiatric label they have been given.
  • perceived stigma or self-stigma is the internalizing by the mental health sufferer of their perceptions of discrimination and perceived stigma can significantly affect feelings of shame and lead to poorer treatment outcomes.

How can we eliminate stigma?

People tend to hold negative beliefs about mental health problems regardless of their age, regardless of what knowledge they have of mental health problems, and regardless of whether they know someone who has a mental health problem.

 “The fact that such negative attitudes appear to be so entrenched suggests that campaigns to change these beliefs will have to be multifaceted, will have to do more than just impart knowledge about mental health problems, and will need to challenge existing negative stereotypes especially as they are portrayed in the general media.” – Graham C.L. Davey, Ph.D

According to National Alliance on Mental Illness (NAMI), stigma harms the 1 in 5 Americans affected by mental health conditions. It shames them into silence and prevents them from seeking help. People need to feel safe talking about mental illness, so here I am talking about mental illness in a public forum.  I do not feel shame.  I do not feel embarrassed. I am not a burden. I refuse to be silenced.  I want people to know that they are not alone. End the stigma!!

Educate Yourself and Others – Learn More

“Everyone knows a little about mental health issues but knowing the facts can help you educate others and reject stigmatizing stereotypes. They are not the result of personal weakness, lack of character or poor upbringing. Understanding mental health isn’t only about being able to identify symptoms and having a name for conditions, but dispelling false ideas about mental health conditions as well.” – NAMI

Ableism in Society – Autism and Mental Illness

Last week my, children and I attended a traumatic brain injury symposium.  I attended for work purposes, but it ended up resulting in so much more.  If you have read my previous blogs, you would know that both my children and well as myself are autistic.  My daughter also has bipolar, more specifically, Juvenile or Early-onset Bipolar Disorder.  She was officially diagnosed when she was eight years old, two years before her Autism was officially diagnosed.  In hindsight, her autism was obvious from the very beginning, she was even tested twice for Autism as a toddler, but her bipolar symptoms seem to over shadow her autistic traits.  Once she started medications to treat Bipolar, her autistic traits became more apparent.  This eventually led to her receiving an official diagnosis for Autism.

My daughter’s autism diagnosis changed after the DSM-V came out in 2013.  She originally was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).  After a re-evaluation, her diagnosis became Autism Level 2 with accompanying language impairment.  The changes in the DSM-V allowed my daughter to get a much more precise diagnosis allowing her care team to develop a more appropriate care plan. 

My daughter is now 17 years old.  She has attended two Autistics Present Symposiums, and now a traumatic brain injury (TBI) symposium.  My daughter does not have a traumatic brain injury, but she discovered that she felt more at home with the people who attended the TBI symposium than she did at the Autistics Present Symposiums.

When I asked her why, she had a very eye opening answer.  What she discovered at the TBI symposium is the people there carried a lot of anger with them.  They are angry about their situation, they are angry about how other people treat them, and some of the people also spoke about their fear of their condition, their temper, and their struggle to adjust and conform to societal expectations.  The TBI symposium also addressed ableism My daughter told me that she encounters ableism every day.  She doesn’t say anything, because she is using so much energy not to get angry.  She is so worried about losing control.  She is at war with herself all the time trying to keep her from being pulled apart by everything she is experiencing internally and externally.  She has nothing left to self-advocate about the ableism she is encountering. 

My daughter told me that she feels people treat autistic people in a softer, gentler way.  People are more accepting of an autistic person than a person who has bipolar.  There is so much negatively surrounding bipolar. She hears people with bipolar are awful, unkind, and cruel people that hurt other people.  My daughter hears it in the media, in school, and out in the community.  Compounding the problem were the voices she would hear in her head telling her she was bad and even instructing her on how to hurt herself with knives and fire.  Luckily, she has not heard those voices in two years, but she still hears the negativity by real people. 

She feels safer saying she is autistic than telling anyone that she also has bipolar.  It takes a special kind of environment where she feels safe enough to disclose about her bipolar.  She felt more at home with people who have experienced traumatic brain injury, because she understood what they were talking about.  She understood their anger and frustration.  She understood the ableism they face and the impatience of people who do not understand the situation.  I am not saying autistic people don’t face ableism.  They do, a lot.  I think what my daughter was trying to explain was that autistic people might be treated with more understanding, but for a person who has a serious lifelong mental illness, that same understanding is not there.

My daughter’s autism and her bipolar are tightly wound together.  Each impacts the other.  How she experiences the world is a result of how her bipolar and Autism interact.  Society as a whole is telling her that part of her is tolerable and part of her is bad.     

I asked my son, who is 15 years old, what he sees when it comes to the difference between how autistic people are treated versus how people with mental illness are treated.  He told me that he thinks autistic people are treated with more contempt and he gave the examples of ABA, “cure”-based thinking, eugenics versus super human perceptions/intelligence like the new Sherlock Holmes. He then said people with mental illness are treated with more fear.  He feels people fear those who have mental illness. 

According to NAMI:

  • Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year.
  • Approximately 1 in 25 adults in the U.S.—9.8 million, or 4.0%—experiences a serious mental illness in a given year that substantially interferes with or limits one or more major life activities.
  • Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.
  • 1% of adults in the U.S. live with schizophrenia.
  • 6% of adults in the U.S. live with bipolar disorder.
  • 9% of adults in the U.S.—16 million—had at least one major depressive episode in the past year.6
  • 1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
  • Among the 20.2 million adults in the U.S. who experienced a substance use disorder, 50.5%—10.2 million adults—had a co-occurring mental illness.

“NAMI condemns all acts of stigma and discrimination directed against people living with mental illness, whether by intent, ignorance, or insensitivity. Epithets, nicknames, jokes, advertisements, and slurs that refer to individuals with mental illness in a stigmatizing way are cruel. NAMI considers acts of stigma to be discrimination. Stigma reflects prejudice, dehumanizes people with mental illness, trivializes their legitimate concerns, and is a significant barrier to effective delivery of mental health services. Because of stigma, individuals and families are often afraid to seek help; health care providers are often poorly-trained to refer people to mental health professionals and/or mental health practitioners, and services are too often inadequately funded.” (Stigma And Discrimination)

Ableism is considered the intentional or unintentional discrimination or oppression of individuals with disabilities.  Ableism falls right in with racism, sexism, ageism, and classism.  People can be ableist without even realizing it. Ableism can exist in many forms.  Here are some examples:

6 Forms of Ableism We Need to Retire Immediately

Ableism/Language

What is Ableism and how is it harmful?

If you have a child who has been labeled a behavior student in school, ask yourself, “Is ableism in the classroom a possible trigger for your child’s behavior?”

If you are experiencing anger in the work place, ask yourself, “Are you experiencing ableism where you work?”

My daughter wanted to add a quote to the end of the blog:

“Spread the facts about mental illness, not the bias!”

To Those Who Still Don’t Understand

(Content Warning: medical problems, references to death, suicide, murder)

I came across an article by Sarah Kurchak today, entitled To Neurotypicals On My 36th Birthday and it really resonated where my thoughts have been lately.  I commented on the article, but I felt I needed to expand my comment.

I have tried to live a healthy life style all my life.  I don’t drink alcohol, I don’t smoke, I don’t do recreational drugs, I try to eat right, and I am I runner.  Unfortunately, the statistics are not on my side.  Due to my genetics, my life expectancy has been shortened. 

As the aforementioned article states, the ages for the life expectancy of autistics vary a bit, but the statistics point to an uncomfortable reality.  Autistic life spans are shorter than typical life spans.  A study out of Sweden completed late in 2015, entitled Premature mortality in autism spectrum disorder, revealed that people with autism died an average of 16 years earlier than those who do not have autism.  There are other studies out there that support the Swedish study findings. 

Why is it this way?  Why do autistics seem to die younger than those who are not autistic?

Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide at some point in their lives.  Bullying, anxiety, depression, feelings of isolation and alienation all contribute to this.  There is a high cost trying to cope in a world that is not designed for you nor is accepting of you.

Then there are the co-existing conditions that seem to be common to people with autism. Chronic health problems can shorten a person’s life span.  Epilepsy, Elhers-Danlos Syndrome (EDS), gastrointestinal problems, sensory overload, and lots of stress related illnesses, which can lead to physical ailments, including heart disease, brain inflammation, strokes, and diabetes – these seem to be common occurrences in the lives of autistic people.  

I was diagnosed when I was 36 years old. This is the same age that the article is focusing on, the same age that the researchers CNN cites say is the average age that people like me die. 

I am a teacher and have been for almost 20 years. During the 2011-2012 school year, the same year I was diagnosed, my doctor told me that my stress was actually killing me. This is why I don’t have a classroom of my own anymore. I was very fortunate to be able to find employment where I can work predominately from home, but still keeps me in the education field. I don’t know if I will ever be able to return to the classroom on a regular daily basis.

Due to EDS, my body has been falling apart all my life. I have been a runner for 24 years. It has kept me out of a wheel chair. I had to stop backpacking and weight lifting long ago. I have had to garden in pots for years now (doctors’ orders). I am not even supposed to push a grocery cart anymore, because the right side of my diaphragm is no longer securely attached.

I don’t know how much longer my body and mind can take. Stress can literally kill you. I am so tired. I do know that whenever I just what to collapse, my body won’t. It has got a lot of fight in it still, though. When everything went to hell at 21 weeks when I was pregnant with my son, my body gave everything it had to keep him alive. He was born healthy and to term. That was 15 years ago and my body has never fully recovered. I am still bleeding internally with significant nerve and tissue damage.

I am 42 years old now and I don’t know how much longer I have. So, I will just keep carrying on the best I can with the time I have.

Looking through my old writings, I see that this carry-on-attitude is found all over.  I mean, what else can I do, but to keep moving forward? I am a single mom for two teenagers.  I don’t feel there is much choice in the matter.  The only other option that I see is giving up and dying.  My resilience is too strong, which I explain in “Strengths of Autism – Resilience”.  My body won’t let me give up, so I keep going. 

In The Hidden Meaning Behind “I’m Tired”,  I explain that the phrase “I’m tired” is just a cover for a long story of struggle, confusion, stress, frustration, pain, and exhaustion.  I am always tired.  It never seems to go away and it has only gotten worse as I have gotten older.

In September 2017, I came across this meme with a quote by Dr. Shana Nichols:

Females with ASD“Females with ASDs often develop ‘coping mechanisms’ that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations. Sounds easy enough, but in fact these strategies take a lot of work and can more often than not lead to exhaustion, withdrawal, anxiety, selective mutism, and depression. -Dr. Shana Nichols”

How long can a body maintain a perpetual cycle of burnout, stress, and pain? 

I really don’t know. 

Something my children’s psychiatrist told us this past week:

ARC – Autistic Renewal Cycle

ABC – Autistic Burnout Cycle

They need to acknowledge ABC, but focus on ARC. Both are in ABC right now. As a family, we need to find ways to break the ABC using ARC.

I have struggled with ABC for so long. Every year I would find myself in some level of autistic burnout. I need to break the cycle, too.

What the ARC looks like depends on the individual. Basically, an individual needs to be encouraged and provided opportunities to do activities that fuel them, that give back emotional currency.

Being stuck in ABC can potentially shorten a person’s life.  The cycle must be broken, but that is not a easy thing to do.  How does one fuel their emotional currency?

Personally, I feel it has a lot to do with acceptance.  I feel acceptance is the greatest gift you can give to a person. 

According to Rick Hanson Ph.D.:

“Accepting people does not itself mean agreeing with them, approving of them, waiving your own rights, or downplaying their impact upon you. You can still take appropriate actions to protect or support yourself or others. Or you can simply let people be. Either way, you accept the reality of the other person. You may not like it, you may not prefer it, you may feel sad or angry about it, but at a deeper level, you are at peace with it. That alone is a blessing. And sometimes, your shift to acceptance can help things get better.”

Acceptance is an action and it requires work.  Kassiane S. explains this concept beautifully in Acceptance vs. Awareness:

“Acceptance comes from a place of understanding.  Understanding isn’t generated by soundbites and posterchildren. Understanding takes work. To accept us, people first need to acknowledge us as individuals-as three dimensional, growing, developed characters. We are not all the same, and we are not but a collection of deficits. Acceptance is seeing that-and seeing that one’s distaste for an autistic person is more likely than not because of “autism”. Awareness tells you that anything objectionable about us is “autism”, but that explanation is clear, simple, and wrong.

Acceptance requires facing that which makes you uncomfortable about us, thinking about why it makes you uncomfortable, and confronting any prejudice at the root of that discomfort. To accept us is to make a conscious effort to overcome that prejudice, to recognize that your discomfort with our differences is far more your problem to overcome than ours.”

In Accept Them As They Are, Dr. Hanson continues to explain how you find acceptance:

“Consider how you have gotten tangled up with this other person, struggling to change them. When I do this myself, I become aware of my own rightness, positionality, judgments, pushiness, irritability, narrow views, hurts, longings, grievances, or remorse. See if you can let go of some, even all of these entanglements. Open to the easing, relief, and peace that can come when you do.

Also consider how much you like it when you feel that another person accepts you completely. It’s a beautiful gift – and we can give it ourselves to others when we accept them. Imagine how it might improve your relationship with someone if that person felt you accepted him or her fully. Acceptance is a gift that gives back.”

I am so very tired of fighting just to survive. I explained this in So, how does it feel to actually live your life as opposed to just surviving?  I chose years ago to live in the moment, because I don’t know how any moments I have left. 

When people want to push the idea that there is a supposed autism epidemic (there isn’t), I have found the question that will inevitably come up is, “If there is no epidemic, then where are all the autistic adults?”

Autistic adults are there and have been there since there have been people.  From what I have learned, autistic adults seem to disappear either by choice or design.  As they age, they either remove themselves from society to get away from the unrelenting life killing stress or they die at a much younger age than non-autistic adults.  The question really should be, “If autistic adults have always been there, then why are you not seeing us?”  

In closing, I would like to reiterate what Sarah Kurchak stated in her article about what to do if you want to help and add a few words of my own.

  • Listen to us.
  • Believe in us.
  • Let us be our authentic autistic selves.
  • Invest in our work.
  • Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure.
  • Meet us halfway, we can’t do all the work to conform to your world. Compromises need to be made and bridges need to be built. Help us build that bridge.
  • Tell us you accept us and mean it!
  • Tell us we don’t bore you.
  • Tell us we don’t drain you.
  • Tell us we are not broken.
  • Tell us we are not a burden.
  • And above all, don’t kill us.

So, how does it feel to actually live your life as opposed to just surviving?      

Have you ever been struggling for so damn long, then find yourself in a situation where things are working out, but your anxiety has gotten you on guard waiting for the possibility of the rug of life to be pulled out from under you again?

Ya, I am there. It sucks the feeling of relief right out of you. It is really annoying. I keep telling myself that I am in a good place right now, that everything I have been working toward professionally all these years is finally starting to materialize and it is not literally killing me in the process, but my damn brain won’t settle.

There are many reasons why I no longer have my own classroom anymore. Due to my physical health, I don’t know if I ever will be able return to a regular classroom teaching position. After nearly 20 years as a teacher, I miss being in a classroom, but my current job is allowing me to stay in the education field and apply my experience and training in a different way by helping one family at a time. I am paying it forward, you might say.

I am still grieving in my personal life. I have been grieving for years. It feels like forever. It is called Complex-PTSD. Even 15 years after my initial diagnosis, the pain is still there.  I have better coping skills now, but it is still hard. These days there are more good days than bad days.

Too much trauma and loss in my life, I suppose. I have been struggling so long just to survive, and be both mom and dad as well as teacher to my children, that I guess I am not sure how to live.

After everything that has happened to me, I have really struggled to convince myself that I have worth. I remind myself constantly. I have worth. I know I have worth.

*Deep breath.*

*Start again.*

I have value. I am worth it. I will not give up!

*Punches chest.*

I am a real person with real needs and dreams. I will not be silenced!

Not again . . .

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Looking at Maslow’s Hierarchy of Needs, I have been at the bottom two levels for many years now.

So, how does it feel to actually live your life as opposed to just surviving?  

2632857_orig   
                 

The Invisible Torturer

Anxiety ImageAnxiety, why do you torture me so?

The shaking,

The heavy breathing of panic, 

The buzzing in my brain that exercise doesn’t subdue,

The pounding stims that have started up,

The flicking fingers that will not still,

Anxiety, just stop!!

 

What is behind all this anguish?

I want to escape, but escape from what?

My senses are heightened for why I do not know.

My feet and legs want to run, and run, and run.  

But where?   

There is no destination that will take me away this.

The torturer is inside me.

 

Anxiety, let me go!

I want to be free, but you are too strong.

Your invisible claws have enclosed around me.

No one sees my torment, for you have taught me to hide.

I must hide this agony, because no one believes me.

I am told I am being silly, that it is nothing, that there really isn’t a problem.

So, I suffer in silence and go about my day.

 

For me, Anxiety and Depression tend to go hand in hand.

I continue to fight against Anxiety and it wears me down.

Depression moves in due to my weakened state.

I am being attacked on all sides.

Yet, no one sees this battle, for the battle is inside me.

I cry, I yell, I run, I write, I make art.

I do this to fight the never ending onslaught of Anxiety.

 

I am weary in this battle.

There are days Anxiety gets the upper hand.

More days than I would like to admit, but I persevere.

Battles may be lost, but I carry on to fight another day.

Because loosing this war is not an option.

I will not allow Anxiety to be victorious.

So I take deep breaths, I center myself, and I continue on.

 

(Image is of a drawing of woman in a dress sitting down while covering her face. Artist is  Clara Lieu.) 

 

Ramblings of an Autistic Single Mom

NOTE: The Aspie Teacher blog is the story of my family’s journey. My first blog was Geeky Science Mom’s Tumblr which I started in September 2012 and my writings gradually progressed from there. Periodically I look back over my old writings to check on the distance I have travelled in this journey that is called my life. This is one of those checks.

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I am autistic and I am also a mother of two amazing young people who are autistic as well. I am also single.  My children see their father maybe two hours every week, sometimes it is less.  He is not really involved in their lives.  For the past four years I have been working multiple jobs to make ends meet.  Somewhere in there I managed to earn my Master’s degree. I have been homeschooling/unschooling both my kids for the past three years and will continue to do so until both my kids graduate high school in another 2-3 years.  It has been a challenging balancing act.

I see articles online about single parenting with autistic children. It strikes me odd how bleak the authors describe their lives. One author claims that single parents of autistic children “can’t have it all”, that they “will never be compensated financially or professionally for the thousands of hours I’ve spent over the last decade taking my son to treatments”. Other authors complain about having to give up their career, complain they can’t go on trips, complain that it was the Autism that caused the divorce, and complain about the “grueling therapy sessions” (if they are grueling for you, how do you think your child feels?)

Parenting is hard no matter what the neurology of the child is. The reality is if you are a single parent, something has to give.  You can’t expect to have everything and the reason why you “can’t have it all” has nothing to do with your child’s neurology. It really does take a village to raise a child, so when part of that village is missing, it gets that much harder.

I willingly chose to put my career on hold when I became a parent. I was fortunate enough to be able to be a stay-at-home mom for five years. At the time, my husband had a good paying full-time job with benefits.  Being a single income family lead to finances being really tight, and we lived in a small duplex, but it was worth it.  The only time I was a home owner was when both my ex and I were working so we could afford a mortgage. As a single parent, I am a renter once again. This time, my rental is even smaller than the one we lived in back when my children were babies. Housing costs are higher and there is a housing shortage where we live.

My children have weekly counseling visits and my daughter has weekly occupational therapy (OT) sessions (something she personally asked for). We live in a rural area. Services are in another county all together. We are on the road a lot and I am fortunate enough to have the type of employment that allows me to take my children to their appointments.  I have never put my children through “grueling therapy sessions” and I never will.  Applied Behavior Analysis (AB A) sessions, which is considered the go-to treatment for Autism, are anywhere from 25 to 40 hours per week for 12 months a year for at least 2 years with sessions typically provided in 2-3 hours blocks.  I spent three hours observing an ABA session in June 2015 as a requirement for my Master’s degree program. It was horrible – Initial Reaction to ABA Observation.

My divorce finalized on June 23, 2014, but we had separated in October 2012. We tried to get back together after being apart for three years. Our attempt lasted a year and a half. My ex just doesn’t want the responsibility of a family.  It has almost been five years since we first separated and I have not tried dating. I have had to let myself grieve.  Looking through my old writings, I see many blogs that focused on sadness and grief.  I have had to allow myself to process those emotions. I have also had to be present for my children.  They have been grieving, too.  There was no room for romance in that.  I have to allow my heart to heal before I can allow anyone else in.  I am still healing.  Everyone grieves differently and the time it takes to adequately heal is different for everyone. When you have been in an abusive situation, it can take even longer to heal and you need to give yourself that time or you could very well fall into a similar situation.

Some of my previous writings describing my journey through grief:

Grief 2

[Image description: Sea green colored background with black lettering. “Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do it lean to swim.” – Vicky Harrison]

Then there is my issue of living in a duality of perception. I wrote that blog in June 2016 and it helped me realize some things about myself.  When I found myself unexpectedly a single parent, I didn’t know how I was going to manage.  My family isn’t in the area.  I was in graduate school at the time and I was working part time.  How the hell was I going to support two kids with special needs on my own!!!???!!! This thought was screaming in my head.  I was so filled with fear and shock I had no time to be angry, at least not yet.  My anger came later.  The grief cycle is an interesting, complicated thing. As I tell my kids, a very wibbly wobbly, timey wimey sort of thing.

I never thought I would get to the point where I would even consider letting my ex back in my life, but I did and I learned a lot from that experience. I learned about letting go, something I had been really struggling with for years.  As a content teacher, I didn’t think I could teach outside of Science (my area), but I found out I could.  I didn’t know I could teach myself how to do basic home and car repair along with all the other family/parenting/home stuff I had been doing for years, but I found out I could. I didn’t know I could parent on my own, but I found out I could.

I learned I was autistic five and a half years ago. Both my children had been diagnosed by that time. I have learned so much since then.  My life has been turned upside down and inside out, but I kept moving forward knowing that another sunrise would signal another chance for me to try again.  I kept learning and adapting.

It wasn’t the Autism that caused my divorce. In fact, divorce rates are similar for parents with and without autistic children, so don’t believe the myth that divorce rate in families with autism is 80%. It is definitely not (80 Percent Autism Divorce Rate Debunked in First-Of-Its Kind Scientific Study).

Looking back to where I was when I first became a single parent, I couldn’t really think of the future. I was in full on survival mode back then.  Looking where I am now, all I can say is “wow”.  I have come so far from that place where I found myself crushed, lost, and desperate just trying to make it day by day.

My journey is not complete, not in a long shot, but I find myself no longer in that place of desperation. I have found a future where I am valued and wanted.  I have found a future where I have developed skills I didn’t even know I had.  I have found a future where my children are seeing a future for themselves as well. I have found that my mind has a sense of ease now.  I still have a lot of stress in my life, but nothing like it once was.  I feel a sense of peace inside me now.  Do I still cry when I am alone?  Yes, my grief will take time to process. Where there was once soul crushing pain, there is now a sense of understanding and a level of acceptance of the reality of the situation. As I stated before, I had to adapt. I had to find peace on my own, and I did.

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”

― Douglas Adams, The Long Dark Tea-Time of the Soul

 

**Image is not mine. Source is linked with image.