Comprehension and learning life’s lessons

In my Uncle B’s eulogy, the story was told of a discussion that Uncle B had with a fellow cancer patient in hospital. This other patient, who was a millionaire, said that he hoped to become a billionaire before he died. Uncle B said to him that his wealth was his faith, his wife and his beautiful family.

I was gobsmacked that anyone could want more money as a last achievement; surely everyone has been exposed to enough proverbs, books and movies that highlight the emptiness of money and the value of relationships. Then, I remembered reading the book ‘Herbert & Harry’ to my sons.

Herbert and Harry were brothers who found a treasure box while fishing together one day. Herbert ran off with the treasure, developed paranoia and lived alone in a fort protecting his treasure. Harry went back to his house on the top of the hill and raised a family of his own. At the end of the book, Harry can be seen in good health reading stories to his grandchildren and Herbert can be seen neither happy nor healthy keeping guard from the top of his fort.

After reading the book, I asked my eldest son Jeremy, which brother he would prefer to be and without hesitation he said Harry. I asked Damian who he would prefer to be and without hesitation he said Herbert.

Damian has always loved treasure, for a long time ‘gold’ was his favourite colour. He would collect stones from gardens and call them diamonds or gems. Damian also loves money. He gets very excited when people give him money for his birthday and he delights in putting it straight into his money-box. Once, when I explained that a friend felt bad because he wanted to give us money for something we had done for him Damian said “That will never happen to me because when I grow up I’ll be rich and people will be asking me for money!”

Damian’s teacher (Mrs L) told me recently that she was ‘blown away’ by Damian’s reading comprehension; meaning that he not only read the words well but he also understood what he was reading. Mrs L gave me a checklist of questions to ask before, during and after reading to extend his comprehension even further.

It occurred to me that with his improved reading comprehension, developed since starting school, Damian may now have a different understanding of the book about Herbert and Harry. I decided to videotape Damian reading the story (my boys love to be videotaped) and I explained that I would be asking him questions while he read it.

Mostly, I asked Damian how each character was feeling at different stages during the book and why*. It became clear to Damian that Herbert was in fact not happy at all and with that knowledge he said, without hesitation, that he would prefer to be Harry. Phew! Message imparted. I’ll be damned if I raise a ‘Mr Scrooge’.

You can watch Jeremy read ‘Herbert and Harry’ (with comprehension questions) here**.

Notes:

* The featured image for this post includes the full checklist of comprehension questions.

** Jeremy’s recording was more entertaining than Damian’s because the battery ran out during Damian’s recording and he lost momentum. However, if you want to listen to Damian read the book then you can click here.

Herbert Harry plus checklist

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Shame and the ‘unwanted identity’

A Facebook friend posted a youtube video that I found valuable so I shared it with my Facebook friends. Then several friends immediately responded telling me who was responsible for the video (Dr Brene Brown) and how fabulous her work on shame was. I replied saying that I would look into her work and I watched her TED talk, found it interesting and then completely forgot about it. In fact, I can’t remember which TED talk it was. It could be either this one or this one. Take your pick, they are both worth a listen.

Several months later, I was talking to one of those friends and she told me that Dr Brene Browns book ‘I thought it was just me (but it isn’t): Making the journey from “what will people think?” to “I am enough”’ changed her life. I asked her to send me the details of the book, which I purchased and read. I have quoted heavily from this book in this post.

I usually only read autobiographies or books about autism but to my credit (patting myself on the back as I write) I recognized how important this book was to my friend and I read it as an effort to foster connection with her (even though she wanted me to read it for me).

By page 74, I sat back in shock realizing that this book would be incredibly valuable for me on many levels but especially as a woman with autism.

On page 74, it read: ‘Researchers Tamara Ferguson, Heidi Eyre and Michael Ashbaker argue that “unwanted identity” is the quintessential elicitor of shame. They explain that unwanted identities are characteristics that undermine our vision of our “ideal” selves. Sometimes we perceive others as assigning these unwanted identities to us, and other times, we pin them on ourselves.’

Now, before you misinterpret what I just wrote. I want autism as part of my identity, I am proud of who I am, how I think and with my achievements and I attribute a lot of that to many of my autistic traits. However, according to Brown “shame is something we have little control over feeling because it relies on the perceptions of us by others.” It is “how we see ourselves through other people’s eyes”… “how others see me”… “what others think”.

I have mentioned before how the rhetoric of Autism Speaks is harmful to people with autism (here) and Brown’s body of research validates that. Well, I recently commented on another organization’s Facebook post about the rhetoric they used and I was so shaken by ensuing discussion that I came away never wanting to promote awareness like that again. I felt as though I was a ‘bad person’ for commenting and I was a ‘lone voice in the wilderness’.

This is what I wrote:

Are you aware of the potential impact of rhetoric such as “terrible affliction”? I know you mean well but please check out this link for more info www.autismacceptancemonth.com/about/ thankyou

It was a little naïve of me to write something so vague and expect an empathetic response. Naturally, the author of the comment came back with a stream of defensive comments that floored me and I realize now the feelings that I felt although complex included a heavy dose of shame.

The author wrote:

I am one of the admins for this page and I would like to respond to your comment. My own family has been touched by autism quite dramatically and I feel that you need to take this into consideration in my following statement.

“Affliction” by Oxford Dictionary definition means “A cause of pain or harm”. If you have read any of the other posts on our site, you would be aware that at no time do we intentionally speak negatively with regards to any form of disability, Autism or otherwise. I have numerous friends the world over, who are touched by that situation in their lives. I don’t believe it puts a negative connotation on the message, nor do they, given the amount of sharing and POSITIVE response.

Is it also not a “terrible” thing, by dictionary definition yet again? What reasonable, cognitive person would think anything other than that? Whilst people may want to sugar coat things as the way the world now works, nobody can dispute the terribleness of those who are challenged on a daily, mostly hourly basis.

Please understand that I know where you may be coming from, however, it does not alter the message I wished to put out to the world, as one of love and admiration for all the struggles those “afflicted” with Autism must face on a day-to-day basis. I would never intentionally place that out there in the world.

I trust you will not look negatively on our organisation from this post, as we do believe we are doing good work in our community to highlight some of the more “hushed” aspects. While others want to sweep these things under the carpet, we wish to provide a neon sign (preferably Blue) to point the way to a better tomorrow.

He also responded to someone else’s compliment on his organizations work as follows:

I personally think the only impact that was not positive was someone drawing attention to 2 small words, which are appropriately used, to describe such horrible circumstances people deal with every day of the week. Most of us take for granted the little things, like having their children say they love them for example. Some autistic children don’t ever manage to find those words to say to their parents, simply because those thoughts and feelings get too muddled. So to highlight those words alone kind of makes the entire message of love, hope and support get lost. With 2 autistic children I take my hat off to you. YOU keep up the good work mate.

I then realized that I needed to clarify so I wrote:

I’m certain you do good work and I am grateful for it. However, I still think my point was valid and I will continue to advocate for people with autism (myself and my children included) which includes a more respectful rhetoric. My boys and I are among many people with autism who do not feel ‘terribly afflicted’ but I do feel terribly misrepresented.

Of course, the discussion went on for a bit longer but his beliefs were clear when he said ‘we must agree to disagree’. I was concise and he was verbose. His perception of people with autism and their families remained “terribly afflicted”.

I have written before about the conflicting viewpoints of different people on autism and its emotional effects on me (here and here), which I urge you to read to get a better understanding of where I am coming from. I now understand that the feeling that ‘shakes me to the core’ and makes me feel faint and nauseous when discussing these issues is shame. I can’t change the way that the author of the post and his organization thinks about me and my children, which is of being ‘terribly afflicted’.

I do not exist without autism, neither do my boys. The way my brain thinks is who I am and autism is the way my brain thinks. Please read more about my thoughts and feelings about this here.

Brown’s book touches on the potential consequences of shame such as mental health issues and addiction. However, Browns focus of the book is on relationships and she cites the major consequence of shame is that it leads to fear, blame and disconnection.

It is not just people with autism who are susceptible to shame Brown writes that “Shame is universal. To varying degrees, we all know the struggle to feel comfortable with who we are in a society that puts so much importance on being perfect and fitting in. We also know the painful wave of emotion that washes over us when we feel judged or ridiculed about the way we look, our work, our parenting, how we spend our money, our families or even the life experiences over which we had no control. And it’s not always someone else putting us down or judging us; the most painful shaming experiences are often self-inflicted.”

Most of Brown’s research is on women and she lists the impossible society- cultural expectations of women as follows:

  • Don’t make people feel uncomfortable, but be honest.
  • Don’t sound self-righteous, but sound confident.
  • Don’t upset anyone or hurt anyone’s feelings, but say what’s on your mind.
  • Don’t be offensive, but be straightforward.
  • Sound informed and educated, but not like a know-it-all.
  • Sound committed, but not too reactionary.
  • Don’t say anything unpopular or controversial, but have the courage to disagree with the crowd.
  • Don’t seem too passionate, but don’t come off as too dispassionate.
  • Don’t get too emotional, but don’t be too detached.
  • You don’t have to quote facts and figures, but don’t be wrong.

This is a ‘double whammy’ for autistic women whose vulnerabilities lie in the very area women are expected to be experts in: ‘social communication’. The shame that we may have imposed on us by others reduces our chances of further connecting with others.

This paragraph from Brown’s book summarizes it quite well “Shame begets shame. When we sacrifice authenticity in an effort to manage how we are being perceived by others, we often get caught in a dangerous and debilitating cycle: Shame, or the fear of being shamed, moves us away from our authentic selves. We tell people what they want to hear, or we don’t speak out when we should. In turn, we feel shame for being dishonest, misrepresenting our beliefs or not taking an important stand.”

So what can we do about this? Brown’s research concludes that although we cannot become resistant to shame we can build shame resilience.

We can build shame resilience by recognizing our shame triggers (be it parenthood, body image, paid work or many other number of things), practicing critical awareness (“understanding the connection between our private lives and social, political and economic influences”), reaching out (“we don’t reach out to “fix” or “save” others. We reach out to help others by reinforcing their connection network and our own”) and speaking shame (“to be able to identify and communicate what we are feeling and why we are feeling it” with regard to shame).

Brown reassures us that all these skills can be learned and provides guidance by sharing stories of other women who have learned and developed shame resilience. She believes that we can create change in our lives and encourages us to do the same; Brown writes:

“Believing that we truly do have the ability to create change in our lives may seem difficult, or even impossible, at first, but it is one of the most empowering steps along the path to developing resilience. When we talk about individual and collective change, it’s important to realize that not all of us are going to engage in political action, advocacy or even small group efforts. Some of us may create change by changing the way we interact with people or changing our relationships. Others may raise critical awareness with friends and family members.”

Brown refers to some of the ways we can create change by referring to the 6 Ps:

“Personal: …Change can take many forms- there is nothing more inherently political than breaking through social-community expectations so we can live our lives at our full potential and help others do the same”

“Pens: Write a letter…petition”

“Polls: Vote. Find out how candidates feel about the issues that affect your life and vote”

“Participation: Learn about the organizations that support your issues. Join them in the fight.”

“Purchases: The dollar is mightier than the sword; stop buying from people who don’t share your values.”

“Protests: A protest is not always a million people marching on the capital. Sometimes a protest is four or five people showing up at a school board meeting or in someone’s office. Regardless of size and scope, when we come together to ask for what we need some people will label our actions as “protest”. If that stops us, we have to ask, “Who benefits by that?”

In conclusion, I quote Brown “if we can find the courage to talk about shame and the compassion to listen, we can change the way we live, love, parent, work and build relationships”. I think this is a valuable thing to aim for; not perfection just connection.

Brown’s book resonated with me and it will resonate with many other people from all different walks of life. There is much more to this book than just what I have written here and it is a book that I feel comfortable recommending to women with autism (and men and women generally) to help enhance connections with others and cope with the stereotypes and ‘unwanted identities’ they face due to ignorance surrounding autism and what it means to be a woman.

References:

Brown, B. I thought it was just me: Making the journey from “What will people think?” to “I am enough” New York, Gotham Books, 2007