*Takeaways Series* #10 Chapter 7 – Personal Safety by Liane Holliday Willey

Spectrum  Women, Walking to the Beat of Autism 

Chapter 7 – Personal Safety by Liane Holliday Willey

While the understanding of the variability of autistic realities is moving from the concept previously confused by co-occurring conditions as completely debilitating, it is possibly leading to the belief that if all looks well, it is well.

page 94

“Simply put, the recognition that autistics are capable in many valuable and unique ways should not be morphed into a belief that we are beyond the need for tangible supports meant to protect us from imminent dangers that we aren’t wired to recognize.”

Some say women appear better at hiding the traits of our autistic challenges and the truths of our deficits. This hiding in plain sight could also be due to women’s problems being written off to the modern-day equivalent of vague catch-all conditions similar to those previously labeled hysteria or neurosis.

The fact remains, as evidenced by my own story and many more, our concerns are often not taken seriously. Even after compelling evidence of 50 years of life-threatening struggles, my official diagnosis report included this statement: “Tendency to over endorse psychological symptoms”.

When pressed to explain this determination, my testing psychologist affirmed his belief that I was actually doing quite well despite what I knew was significant distress, and he deemed me certainly not in need of autism-specific assistance.

This isn’t an indictment of the psychologist so much as it is of society and the narrow-minded professional education resources. Sadly the underlying message is that women’s complaints are not to be taken seriously other than as a result of their own making.

These facts would explain many other times in my life where my own understanding of my distress in a situation was not believed or corroborated by observers.

For autistics who don’t have a good internal sense of boundaries, continual dismissal of our fears and anxieties can cause us to become more confused about our own ability to discern our mental states and to lose confidence in our own skills of autonomy. This is a self-perpetuating dangerous state that can have us believing that speaking up or out is being difficult, bitchy or hormonal; in other words ‘bad’.

The first most difficult barrier to assuring our personal safety is understanding personal boundaries and the right to assured autonomy.

I did not understand my rights to govern my own comfort and my own body.

I did not understand the concept that people in positions of authority, and otherwise trusted and ordinary people could be abusers who did not have my best interest at heart. I mistakenly thought that monsters had monster faces and clear-cut behaviors that pointed them out as untrustworthy.

I really did not know what abuse was.

page 95

“In fact, and make no mistake about this, abuse is a multifaceted state that can take many forms including (but not clearly limited to) any word or behavior pushed upon another person in a way that sparks physical, emotional, financial, sexual, negligent shocks, or after-effects.”

Sexual Abuse

It may be the single most important concept to understand, we always, and at all times, have the right for no to mean no.

Predators have a sick sense for what motivates vulnerable individuals to relinquish their personal power.

page 98

“There is absolutely no set of circumstances under which you are obligated to move beyond your comfort zone.”

Economic Abuse

Liane lists 4 scenarios that describe ways we can be victims of economic abuse. Anything that keeps you from financial independence and which involves being controlled by the decisions of persons in power over you is likely economic abuse.

Too often I was a victim of the first scenario Liane describes. I was harassed at work to the point of resigning to save them needing to make up reasons to fire me.

Liane asserts that no matter your challenges with math or finances, this is one area where it’s imperative you learn enough not to be at the mercy of others.

Physical Abuse

For many reasons, autistics can be fooled or convince ourselves to remain in a physically abusive situation. To help autistics better recognize physical abuse, Liane provides a list of unacceptable abuses.

Know that not recognizing these things is not a reason to beat yourself up. There are valid reasons that may have prevented you from realizing this sooner.

It is particularly important to see that any past reporting to authorities might have resulted in our being dismissed for many reasons beyond our control, do not let not being heard color your own perceptions of what you know to be truth.

page 101

“… we don’t often look the part of a person who has really been abused, “

Emotional Abuse

There are way too many ways emotional abuse can go unperceived. From the subtle ways, people get their digs in.

I used to say of my school days that Catholic girls have a special talent for delivering insults that can easily be defended as having benign intent or even be seen as compliments. ( “Your hair looks so much better today”)

Liane provides a really thorough and descriptive list of emotionally abusive situations; unfortunately, I can say I can personally check off every one of those.

Liane ends this chapter with the acknowledgment that we all have different personal thresholds for what we find acceptable and tolerable, it is important to know the extent and impact of the trespass over our boundaries when attempting to self-advocate. If things do go past this threshold, it is important to have the strength of conviction, and not feel shame in reaching out for help.

Dr. Garnett on Personal Safety

Dr. Garnett outlines and restates the reason autistics, even those without co-occurring intellectual challenges can be vulnerable to abuse.

Page 101

-Individuals on the autism spectrum are not neurologically ‘wired’ to read the intentions of others.

-They may not recognize abuse because of their tendency for literal thinking and self-blame.

-Their inner fears of rejection and/or low self-esteem can lead to an acceptance of certain levels of abuse.

-Their innate social confusion and intricate analysis of social situations can lead to poor judgment and decision-making.

-Their natural tendency to believe in the honesty and innocence of other people can lead to naiveté and vulnerability.

-Perpetrators recognize that the person is unlikely to tell others about the abuse because of their high levels of anxiety and lack of assertiveness skills.

Dr. Garnett outlines the actions that can and should be taken by individuals, families, schools, and community to help autistics and help autistics help themselves.

cactus
Sometimes our natural defenses are not enough to ensure our personal safety

 

 

 

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*Takeaways Series* #9 Chapter 6

Spectrum Women, Walking to the Beat of Autism

Chapter 6 – Socializing, Anxiety, and Addiction  by Barb Cook

Our motivations do not sound significantly different than most people. Wanting the feeling of having control over anxiety and to be confident in social situations is likely one of the biggest reasons most people drink or use recreational drugs.

It might seem the same on the surface, but the unease, anxiety and social awkwardness of the autistic experience can be exponentially more intense when there have never been positive experiences of being settled, safe and socially acceptable.

In recounting the journey in depth, beginning with the first tempting and temporary reprieve from crushing anxiety,  suppression of the bombarding negative thoughts, to the emotional crutch of addiction, Barb’s story reveals the seamless slide from false confidence to destructive depression.

In telling her story and detailing each rung of the ladder out of the pit of despair she offers a roadmap and recipe for hope.

page 87

” I found that I needed to put myself in situations that helped and supported me as a person, rather than try to mask and pretend all the time to fit into an unmanageable role that wasn’t designed for my neurology. I started to make peace with myself, be kinder to myself, and try to take heed of how destructive the path actually was I had chosen.”

I found the paradox in the words that describe how alcohol gave control and how not using alcohol allowed her to take back control particularly profound.

Control plays a huge part in why I don’t drink, use substances recreationally or tolerate narcotic medications. Control is really just one of those intangible things that can feel so real and substantial but it’s all an illusion.

We don’t control the development of negative thoughts, we don’t really control how others perceive us or react to us and we don’t control the formation of our emotions. We only control what we do with these thoughts and feelings. The ability to withstand having unwanted thoughts and feelings and not allow them to rule us is a skill acquired when we have the luxury of feeling safe. Alcohol and other substances can give us a false sense of that security, one that can actually put us in more danger.

Dr. Garnett on Socializing, Anxiety, and Addictions

Dr. Garnett concentrates on the prevention and treatment of addiction in her section.

In prevention, she presents methods of countering the issues that lead to the temptation to self-medicate. She lists methods of adaptation to address the underlying problems that can be the motivation behind substance abuse.

In treatment, she admits that most addiction resources do not include an understanding of autism. She offers ways these services and programs might be altered, adapted and supplemented to be more relevant and successful for autistics.

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photo credit Pixaby

 

One of (the Many) problems with Mental Health “Professionals” Surrounding Autism.

A friend is preparing a presentation and asked for Autistic’s experiences with professionals.

This blog post is my essay to hopefully be distilled into a few lines.

I wrote about my experience in this post Self Help; Because “No one else is going to help you”

I have had more time to distill more about what was underlying all that mess.

Just a quick recap for those who did not follow the link.

In my post-diagnosis session with the testing psychologist, I asked for what therapy there was to help me cope with my challenges.  The psychologist’s replied that the only therapy was designed to teach what I had already accomplished. ( masking my autism). When further pressed for strategies to deal with my social challenges I was told to pre-script all my social encounters.

Not only is that impossible but it was what I had been doing without success and actually the source of more than half of my most serious problems. My previous therapist felt that exposure to social situations was the only way I was going to be able to cope better with them so I had stopped my own coping of avoiding them. I had amassed an overwhelming pile of social failures and was no better off on picking the right script as I had been previously.

There was a line in my diagnostic report that at the time made me furious. I did not know it at the time, but the people I told thought I was furious because it was an unflattering criticism. I was furious because the statement could not have been more wrong.

“Tendency to over endorse psychological symptoms”

I had actually held back on some of my most dark and despairing reality so as not to risk being committed to a psych ward. ( I feel safe enough revealing that now as I am no longer in that very dark place)

I was so concerned that I would come across as unhinged and be considered a danger to myself that I acted like I was not as messed up. I do that, I calmly recount things from a knowing observational perspective that are incredibly painful. Little did I know that it meant I would be seen as functioning well enough.

Here was this very experienced forensic psychologist who I was convinced had the training to see through every mask and veneer and I had obviously fooled him completely with my autistic mask being only half on?

Or was it that my autistic challenges were not affecting him or anyone else while they raged like the 9th circle of Dante’s Hell in my own psyche?

I feel that the research on autistic masking that shows a direct correlation to suicide and early mortality needs to be mandatory continuing education at the least. Because If the resounding understanding by the “professional” I was lucky enough to have access to is that masking is the preferred end goal in the life of an autistic they may as well condemn us all to death.

Telling an autistic that learning to mask is the answer to handling autistic challenges is like telling a diabetic to hide when they have blood sugar issues and instead of treating themselves with insulin pretend that they are fine and go on so as not to alarm or disturb those around them. If that behavior ends in a diabetic coma then well, that is just the fault of the diabetic then for not handling that well enough without insulin. It truy makes as much sense.

I will not comprehend, so do not try to explain, why so-called professionals cannot see that sweeping an issue under a rug by making the outward appearance of autism not so obvious is ridiculous at best. Yet there I was being told that I had achieved the pinnacle of success when my life was literally in ruins and that my problem was I did not think I was ok. Right, and telling a diabetic in a blood sugar high that a coma isn’t all that dangerous, so have a little more candy,  makes about as much sense.

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Life After Diagnosis: Medical Professionals- A Visit to the Neurologist

I saw my neurologist today. It went well. My cluster migraines are pretty well under control, this was just a follow-up.

For so many years the stress of just having any doctor’s appointment was horrific. It dawned on me as I was getting ready for this one that did not even think to worry about this appointment. It was only the second time seeing my new neurologist since the last one retired. I barely remembered the appointment last year but I do remember feeling good about this younger female neurologist. I was right not to worry, she is really great.

I am fortunate to have 3 doctors who I actually look forward to seeing. This is only a recent development.  It did not come easily and I paid dearly for the education that got me to where I am.

I almost did not survive my past encounters with the medical profession. I had been dismissed, mischaracterized, ignored, and on the receiving end of some blatant disdain.

Because I am privileged enough to have decent medical insurance it was not such a huge thing for me to keep shopping around doctors and insisting on medical testing. I had put up with what really amounts to abuse by neglect for so many years because of my emotional issues with questioning authority and knowing my boundaries.  I was originally driven to self-advocacy despite the humiliation because my children needed me.

It should not be on the patient to figure out how the communication is breaking down, but that is how I got where I am today. I figured out why the doctors were not really hearing me and not taking my concerns seriously.

I learned that my mask that kept me from being discovered as autistic projected an aura of “I’m ok”,  maybe the word stoic can describe that best. My pain and my challenges just did not register as significant to others.

I learned that when I was in a doctor’s office, I lost my ability to communicate without realizing it was gone. I thought I had expressed what needed to be expressed, but I was not heard.

I learned that I had to be very specific about my concerns, and my symptoms and how they impacted my quality of life. I needed to appeal to the compassion of that doctor to fix what kept me from functioning. I needed to write it all down concisely and with the best descriptive words as well as the cause and effect the symptoms had on my life.

That was all my part, but the doctor needed to do their part as well.

They needed to respect that what I had to say was useful information. They needed to understand the parts that I might be factually mistaken about, but instead of using that to dismiss everything I said,  take the time to see what part actually might fit different facts.

Some of what we encounter from doctors has nothing to do with our neurology and our communication challenges. Some doctors did not go into the profession for altruistic reasons, or if they did, those ideals got forgotten. Some Doctors have concerns over student loans and “living the life” they thought came with the job. Their minds are motivated by something else. People are flawed.

To explain the varied kinds of medical professionals I have an example.  I told 2 doctors about symptoms that I feel are intolerable side effects from a medication. One doctor says “that is not possible” period. The other doctor says “let me check the literature on that again” or “I’m not sure its the medicine lets see if it might be something else”.

Today I told the neurologist that some estrogen prescribed by the GYN had caused headaches. Seemed perfectly sound logic to her. She trusted my ability to note the correlation to taking it and having headaches when I had not had them before in a very long time.  But the GYN had said the way it was delivered meant it was not possible to affect me systemically. ( despite it being listed in the medication insert). If I had not been assertive and said the benefits don’t outweigh the quality of life there would have been other consequences to my physical and mental health. If the GYN did not believe in a possible correlation, the correct response would be to address why there were headaches or symptoms at all where there had been none, not flat out dismissal.

The above example is a way that non-autistics could also be treated, the extra dimensions of being autistic involve things like not being able to comply or communicate non-compliance.  Deciding to suffer side-effects that cause more difficulty than the medication benefits affects the quality of life.  There is a potential for great emotional turmoil in all of those decisions. If the doctor believes the patient is taking the medicine as directed it can also mean they are not monitoring for any serious conditions that the medication was supposed to allay.

I am someone who grew up understanding medical terminology and physiology because my father was a physician. This played into some of my challenges with the medical profession but it is also why I am still alive today. Many years ago, in my 30’s,  I did not accept the final word from Emergency room personnel and pestered my primary care doctor into looking more into my condition. Speaking up and making ourselves heard is just not something I see a natural autistic strength.

While I did figure the ins and outs of dealing with the medical profession and getting the care that I needed, it has still continued to be a source of impossible stress.

Knowing that much of this is due to not only my neurology but the build-up of past traumas has helped me in amazing ways. I have much more strength to trust my own convictions and understand that if I am dismissed that it is on the other person and not because I am being ridiculous. In the past, I put too much value on the doctor’s final authority and less on my own instincts and feelings. I can see better what is what and know better what might work to have the best outcome.

I have more work to do.

The idea of a new doctor is petrifying. I have put off routine and needed procedures because I can not steel myself to face and tolerate the chance I will feel violated. Because allowing someone intimate knowledge of my body when I know they do not respect me is a violation. Not really listening to me, dismissing me and making erroneous character judgments is not respect.

I know how to determine if the doctor is a good one for me, I just can not seem to trust my feelings and my judgment in the moment. My brain and processing seem to just freeze. Even if it feels wrong and uncomfortable, I forget how to handle that. The fear that I could be wrong, and actually be ridiculous or too difficult seems too high of a risk.

I’ve got the writing down part, and the practice communicating. I just don’t have the self-assurance.

I know that I need to build more trust in myself, even in my instincts that seem to take over when my reasoning can not cut through the fear. I know that I need to believe I am worth it enough that its not such a huge thing if someone thinks poorly of me, or if I am indeed wrong.

Knowing what I need to work on is really more than halfway to solving the problem.

violet brain

 

*Personal Takeaways Series* Spectrum Women, Walking to the Beat of Autism ~ Part Eight , Chapter 5 Personal Relationships by Jen Elcheson and Anita Lesko

Broken, confusing and intensely painful, interpersonal relationships rank the highest in quantity in my hoarders closet full of life’s tribulations and agonies. I hold onto the razor-sharp shards of each and every one, often buried and lost, yet never completely forgotten. Every new social fiasco rips open some old badly healed wound.

As life seems to do, the time I set aside to do this takeaway could not be more fraught with relevance to the chapter’s theme. At this moment, I find myself in a trough or valley in understanding my failures with friendships.

Finding what works for you

Jen Elcheson

Friends

“Lots of us will settle for any friend”

Often when I express myself about my friendships and relationships it ends up being a detailed dissection and description of one facet in something that has thousands of viewing angles. The truth is that any relationship is going to be that complex but my mind will attempt to categorize it by those individual facets forgetting about the value of the whole picture. In this way, my relationships become some really mixed up heterogeneous conglomerations.

It often has felt like the proverbial box of assorted chocolates. Not that I never knew what I was going to get, only that I have very particular preferences, needs, dislikes and intense intolerances that I don’t seem to honor when seeking connections; or chocolates.

It so happened once that given a box of chocolates I kept testing each one hoping for what I wanted and being disappointed. I prefer caramel; I will be ok with nuts, but I hate fruit flavored cream centers. I would hopefully pick one up and tentatively bite it to find it was not what I really wanted, yet I would eat it anyway.  I actually did this for a while once before reading the label that said “assorted creams”. I can only guess that the veneer of having the chocolate on the outside drew me in. Although I wanted that caramel so much that it kept me trying,  biting into each cream with that great hope that it would satisfy, I settled for the fact that at least it was sweet, yet in reality not liking it at all. So many of what I can only inadequately label friendships were and are like that. On the surface, they seem to be what I want and I can appreciate what good there is in them. The wrong ones never please or satisfy me.

Jen offers tips for forming friendships and guidelines for each stage of friendship including the reasons why they are important.

She covers ways in which the internet can help friendships both by forming them and by practicing interpersonal skills. I can say that for me it has offered many lessons on how to deal with misinterpreting and being misunderstood. There are concrete trails of written exchanges to be analyzed until things become clear. Being able to see evidence of when I was unable to explain things clearly really helped me to understand what others saw in my words.

The internet has given me the distance to feel safe enough to deal with things that felt or were actually offensive to me. It removes the sensory issues, questions of tonality, and body language cues that can be so challenging. The timing of taking turns to express ideas is not so fast-paced or structured so that pressure is off.

Being able to stop when you don’t understand something and go do a google search really allows you to stay in conversations where you would have felt lost. The access to information to learn about all aspects of interactions when it is actually relevant can reduce so much of the social anxiety.

Stranger, acquaintance, friend, close friend

Jen lays out the defining factors of the classifications of friendships and why it is important to know the difference.

If a stranger or acquaintance were to treat me in a dismissive or mean way, I can deflect that by realizing they really have no obligation to know me or care enough about me. I can see that perhaps their actions are not dismissive so much as a lack of connection in the first place.

If I think someone is a friend and they are dismissive or mean, that is going to confuse and hurt me. To me, connection plus friendship implies that a person would not intend real harm.

Confusing the two ( stranger and friend) muddles everything. I do this way too much.

Like my chocolate analogy explains, I have settled for people who were more frenemies; acquaintances who were in the relationship for what they got out of it, but who had little concern for my actual well-being, sometimes even wanting to see me fail.

Somewhere between a healthy boundary and letting barriers down enough to allow connection is the sweet spot; the caramel covered in chocolate.

The consequence of never letting those barriers down is that I can’t let the good stuff in; like compassion. Yet being too vulnerable to people who are not going to be concerned with our feelings and sensibilities can lead to feelings of intense betrayal when they breach that non-existent trust.

Relationships, romantic and otherwise

Page 72

“We may experience relationships differently, we have the same kind of relationships as non-autistics, contrary to the arbitrary assumptions people hold about us.”

Jen brings up the truth that it is about what works individually and not by applying rigid expectations based on external societal norms. The “rules” in existence are based on the values and capabilities of the neuro-majority.

The autistic experience can be more extreme, making comparisons to the neuro-majority can make these differences seem painfully obvious. There is no “right” way when it comes to how we experience the world; we just do. Some people cannot be ok being around others all the time where others can’t be ok with being left on their own too much; being an outlier does not equate to being wrong.

Jen suggests seeking resources on relationships created by autistics to better understand things that have worked for autistic relationships. It is important to look into a great variety of different approaches and experiences.

Page 73

” ..friendships and relationships aren’t easy for us, but they are possible. It may take more work and more conscious thinking on our part, but these relationships are worth it, and we are worthy of them as well. “

Marriage

by Anita Lesko

When Anita writes “there was something about me that made friendships impossible” she sums up the deep lament and despair I experienced for the 51 years that I was undiagnosed. I was convinced that I was intrinsically flawed. I gave impossible amounts of time and energy to figuring out what was wrong with me.

Unlike Anita, while I could never feel that I had the kind of connections with friends or even my siblings, the story of my meeting my husband when I was 18 has something of the mystical to it. We were just meant to be, we just connected.  I often reasoned that all my allotment for connection was put into that one relationship because we were and are, intrinsically intertwined.  Realistically, I  put it down to his unconditional acceptance of me, he did not just tolerate my quirks he found them endearing. Acknowledging that the secret to our relationship was due to his unique abilities to love me,  did not absolve me of the feeling of being incapable of forming other meaningful relationships.

I cannot agree with Anita more when she states that marriage is a job. It takes work and equal commitment to make it work.

It is unreasonable to expect to be able to consistently put in the amount of often selfless effort required when you don’t place ultimate value on the success of the relationship above immediate individual needs and desires. The entity of the relationship is bigger than the sum of both its parts. Shared values and goals are the strongest foundation.

Page 75

“We view our marriage as an avenue for encouraging each other to become the best that we can be.”

Anita details the things that make her marriage work well. I can attest that many of these things are also part of my successful relationship.

Communication is key.

Successfully communicating requires knowing what you need and want clearly enough to express it. Many autistics face challenges with alexithymia, not understanding what we really need in the moment and struggling to put ideas into words. This requires more patience, understanding, compromises, and allowances.

There are always good times and bad, there will be lows and desperate times, expecting perfection will always disappoint you.

While my husband is neurotypical, the same methods for keeping our relationship strong apply to all relationships.  Shared interests are non-negotiable, for autistics that can take on a very different appearance.

Dr. Garnett on Relationships

A reminder that it is likely that any individual, much more likely for an autistic individual, would not relate to the same combinations of relationship needs. It can be very hard to know if that one of a kind way of being that is the autistic experience can ever find true connection with another being.

Human connection is a real need, but the means to meet that need, as well as the depth of that need, are uniquely varied.

In reassuring autistics that there are indeed many more ways to true human connection than can ever be expressed, Dr. Garnett mitigates that lament of those who are in despair.

Page 77

“If you do not relate to these descriptions of personal relationships, do not despair: there are as many ways of finding a personal connection as there are people on the planet and the myriad of ways the dynamics work between each of these people. ”

 

bitten chocolates

 

 

 

 

*Personal Takeaways Series* Spectrum Women, Walking to the Beat of Autism ~ Part Seven. Chapter 4 Diversity, Gender, Intersectionality and Feminism by Catriona Stewart

The fact that I found myself googling definitions and descriptions of many things while I read this chapter is an indication that it has peaked my interest and motivation to learn.

I am somewhat ashamed to find that there are too many of these concepts where lacking the basics of understanding has negatively impacted my life. I feel much more grounded to comprehend not only the challenges of those I might encounter but also the world my grown children must navigate. So many of our conversations make more sense to me now.

I am impressed that the author of this chapter, Catriona, has studied gender, feminism, and intersectionality extensively as well as formally as an intense interest.

Diversity

This section explores the meaning of autism as defined as a “developmental disorder” by breaking down the core definitions of each term and providing references to scholarly writings on the topic.

Establishing that the issue with applying the term “disorder” is that it bars the wider concept of diversity from fitting within the parameters of natural, normal, human variation.

pg 58

” I object to the term “disorder” for many reasons, but in this context, because it is a way of saying someone is not capable of achieving their full human potential, of actively evolving and, most importantly of all, of growing along the lines natural to their kind. the greatest barriers to all autistic people developing their full potential are surely the narrow, limited ideas of what it is to be human and therefore what is “natural to our kind”. “

Gender

[At the time I am writing this the term gender is returning heated national news on a google search.

Since the concept of gender itself is in the way of being a trigger for animosity, know that I will not be party to fanning the flames of contention while the political world around me is already a raging inferno.

As always, personal condemnation will not be tolerated.

One day I hope to have enough of my own equilibrium to engage in debate without the resulting despair for the state of humanity; today is not that day.

I suggest that anyone who feels the need to debate or further educate on the finer points of contention scroll on by. ]

Pathologizing of gender role non-conformity appears to be another facet of how the shape of autistic identity is forcefully constrained within too narrow of a mold.

pg 59

“It bothers me greatly that having raised two girls to their own young adulthood, that young people seem to be under more pressure to conform to fantastical stereotypes of “femaleness” and “maleness” than even my generation, and that being a “tomboy” is now described as a pathology.

As in many areas of my own life that did not fit the societal norms established by the neuromajority, the determination of gender roles made no logical sense to me; not in the how and not in the why.

Perhaps for this reason, I found it impossible to explain to my daughter why the boy scouts got to do so many things involving practical skills while her troop of girl scouts found the badge activities involving appearance and personal hygiene of the utmost importance. Even an 8-year-old can spot the evidence of women being consigned to the frivolous. Yet, it is more often that boys present challenges where personal appearance and hygiene are concerned.

I find it so messed up that in a world where it is solidly likely that a woman would need to have both emotional and physical strength that strength is not only a characteristic typically assigned to masculinity but can win a woman censure.

Feminism

Catriona explains that the concept of Feminism has a long history of evolution from the original goals of the first wave and that it continues to evolve to meet the specific goals of equity and working against the power imbalances that persist today.

I learned that oddly contrary to its name, feminism at its core is against gender stereotypes and the divisions created by gender roles.

Intersectionality

[The crossroads where imbalances in power, ability, resources, and opportunity combine to prevent equity.]

pg 64

“This is intersectionality, where conditions of inequality and marginalization meet and cross over like the intersections of trunk roads or Venn diagrams.”

Creating equity for Autistics is not very different on the surface than it would be for any other marginalized group. It involves adjusting for the roadblocks preventing opportunities for inclusion and access to resources readily available to others. The difficulties lie in identifying and making known and visible the challenges and obstacles that Autistics face.

In Conclusion

Catriona makes the case for the importance of visible female autistic role models as one of the specific resources that need to be made available to approach equity for girls and women on the spectrum.

Dr. Garnett

Dr. Garnett addresses the history of autism research as it plays a role in the inequality for females on the spectrum.

pg 68

“Is autism a disorder? It seems that in our society, in order to receive funding and a unique understanding about how one thinks, senses, perceives and learns, one must be diagnosed with a disorder.”

 

apple pear
Commonly known as an apple pear

 

 

 

 

 

 

*Personal Takeaways Series* Spectrum Women, Walking to the Beat of Autism ~ Part Six , Chapter 19 – Intense Interests by Christine Jenkins and Renata Jurkévythz

This is part 6 in my takeaway series and chapter 19 of 20

Where once I had trouble starting this book because my executive malfunctioning meant I had trouble sustaining concentration for long, I have discovered that this book has a built-in solution. Each chapter really can stand alone. I do not know why this surprised me because after reading only these few chapters I realize at least one of the authors must have been in my place at some time.

Recently rediscovering both the healing and life balancing power of my own intense interest makes doing my takeaway on this chapter of immediate, significant and profound relevance to me at this moment.

I am late to diagnosis not just in terms of my age but in terms of life phases and roles that have come and gone in my life.

My current phase of empty nest , end of career and changing physical status creates one of the most significant, unpredictable, confusing and transformational transitions since puberty. Even without complications, it would be hard.

There is a significant redeeming quality of this time in my life but it is a double-edged sword. In all the other phases and roles I had neither the time nor the freedom from constraints of external expectations and demands. For the most part now my time is my own and the demands are largely internal. This is by no means the joyful state it sounded when this was not so.

The day my copy of  Spectrum Women arrived I randomly put my thumb into it at chapter 19. I did not know then that this phenomenon would be the case most of the time, but the words on the page could not have been more personally relevant to my life at that moment. I reluctantly put the book down believing I needed to start at the beginning.

This book truly is like those illustrated tourist maps set along paths to a discovery and exploration that say “you are here”. At that moment I was RIGHT THERE. I was questioning my purpose, evaluating my worth based on productivity; I couldn’t see any. In the lack of structure and the lack of demands, I knew I stayed busy all day, I just did not feel like I had anything to show for it.

This is the chapter opening quote on page 269.

“Some of us believe we have to be productive, to justify our existence by what we do “for a living”. This chapter is about what you do “for life to be well lived”.

While I could rationalize that my time spent trying to figure myself out with the new information of Autism had worth, it felt more like running to stand still.

I believed that the key to feeling better was in finding my “true purpose” ( somehow that needs a ring of neon lights around it). This true purpose was supposed to create a structure to follow, allow me to gauge my productivity toward my goals and give everything meaning. It really did not work that way.

After much soul searching for the answers, and several false starts, I came to only one painfully clear conclusion. For whatever reason, my life lacked joy; not in the “I’m depressed” kind of way but in the unfulfilled kind of way. The big question became what brought me true joy.

It seemed that each new morning I woke and dragged myself out of bed and into my day. On the morning of October 1, upon opening the curtains of my bedroom window I saw one of my favorite butterflies. A red spotted purple. The sheer moment of gleeful excitement pulsed through me.

I had forgotten this huge part of my life not only because of the demands of my life roles but because auto-immune arthritis had robbed me of the physical capacity to maintain my butterfly garden. I had shut it all away as to not continually grieve its loss.

Skipping the particular details of my attempt to adapt and rekindle the pursuit of this intense interest I will simply state that the revitalization is proving how much this permeated all aspects of my life; just as I believe our individual intense interests are meant to do.

Chapter 19 addresses different interests and how they both integrate our lives, ground and balance us and provide that sense of fulfillment and true joy.

Why Interests and Passions Matter

by Christine Jenkins

Christine poses several questions to help us detect our interests. One of these methods describes my revelation well.

Pg. 270

“What makes you light up inside?”

Collections and Hobbies

In this section, collections are expanded beyond physical things to encompass collections of knowledge. I keep a mental checklist of  “life experiences” that can also likely be considered a collection; I am collecting memories.

Technology and Gaming

by Renata Jurkévythz

I was not expecting to understand, much less relate, how gaming played into this because I am not one who has even a remote interest. I have to commend Renata doing an excellent job of defining and describing this in a way that makes it all make so much sense.  I appreciate having a better understanding of my fellow autists who do have gaming as an intense interest.

Renata divides the two experiences of different kinds of gaming; story based games that engage emotional connection and puzzle games that engage the entire intellect to outline in detail how these are incredibly valuable sources of stimulation and relaxation.

I understood better how my own mindless “strategy” puzzle game, while not a true interest but more a calming tool,  works.

I can see the value of gaming as healing, a way to promote emotional connections, allowing the experience of direct control, and as a way to practice resilience and gain a sense of success and accomplishment. It is more than just an escape, it’s empowering.

“So for me, gaming is about connecting with myself, refiling my energy and preparing for the battle that awaits me outside”

Immerse yourself in Nature

by Christine Jenkins

Christine touches on the specific instances of the healing power of nature. In Take Back Something Worth Remembering and Walking on Water she interweaves the larger truths of the importance of nature to the human soul with the specific balms and healing opportunities it provides to the autistic.

Her imagery of water and the freedom of paddling a canoe, spin a sensory web and help me get in touch with my own remembered feelings and in that way experience them again while here on dry land.

Perhaps the value of nature to the human experience is well documented and well known; Christine’s words give credence to my own strong beliefs that nature is of utmost importance to autistics.

Nature with its predictable unpredictability and seemingly random repetition of patterns in a structure often hidden beneath chaos provide the ultimate combination of stimulation and relaxation to a brain that both craves complex input and can become overwhelmed.

Talk to the Animals

How often when human connection failed did you turn to a companion animal? ( Perhaps a stuffed toy creature)  This narrative of turning to the animals is portrayed in many aspects of media.

I don’t think I will get any arguments by stating that autism itself is defined by the challenges of social connections. It should, therefore, follow, with no surprise, that many autistics rely upon their deep connections with animals.

Christine writes this about cats, but this part can be said of all animals.

pg 275

“They don’t notice my lack of social skills”

That is the trait of animals that seems to get us opening the door to our hearts, our animals give us so much more.

The Arts

Not being musically inclined I expected to feel left out by Christine’s story of how big a part music plays in her life. She succeeded in taking me along on her journey of how one lifelong intense interest wove through the fabric of her life while also relating her experiences of music to the larger experiences of life in general. Thanks to her, I can see how my love of plants and butterflies also relates to so many aspects of my own life. How it carried me through some difficulties and made hard times more bearable.

Sharing Your interests

Christine explains how sharing interests can work as a way to create and have connections.

Avoid Info Dumping

Christine gives practical advice on how to manage the intensity of an interest so as to not annoy others.

Changing Interests

I was concerned, and I have seen concern expressed in the often fickle waxing and waning of intense interests. I like the chart of constant/enduring vs the intermittent/passing interests.  Things come and go in our lives and our needs change, the ability to let go of a pursuit can help us not spread ourselves too thin.

Major on the Majors

Concentrating on the good in our lives and on our strengths can help us weather the difficult. Switching our focus from seeking outside validation is easier when we can be validated by experiencing our own joy independently of others. Intense interests give us both the escape and a way to have fulfillment, personal growth, and respite.

Dr. Garnett on Intense Interests

Dr. Garnett covers how women differ from men in their intense interests but how they fulfill the same purposes.

pg. 281

“Intense interests bring joy, relaxation, a sense of identity, and fulfillment, friendship with like-minded people, and can lead to a satisfying, successful career.”

A list of the characteristics of the cognitive skills associated with the pursuit of intense interests is found on page 283. Evaluating these skills can reveal specific cognitive strengths and provide examples of positive attributes on which to focus.

red spotted purple life cycle
At the height of my intense interest in butterflies I photographed the life cycles.