Learning about life during the panemic: More on books & movies, this time on Aspergers and autism

Sarah Hendrickx

Laura James

Once upon a time, a form of brief entry writing emerged and developed, which were called weblogs. These recorded what the writer had experienced on line that day. Gradually the form was shortened to blog, and the original meaning lost as the blogs began to fulfill so many other functions, take so many forms. Throughout though, one central reality remained: at some level they are all talking about on-line life, or making it; they are all irreducibly semi-autobiographical at core, shaped by the originating writer.

A touching movie made by Icelandic women about ordinary autistic girls and women (available on vimeo)

A significant, moving and even important (so rare is this topic broached even) movie about autistic women; it’s by an Icelandic woman, and the people participating are all Icelandic. You do have to pay to see it as a Vimeo; I did do it, joined by typing in my email and then making a password; you pay per video and this one is $8.99 – -I will watch it again and blog on it.

It opens with the problem that most research on autistic people has been on men (continues to be) and the argument for this is most autistic people are men — will this is self-fulfilling; again society just doesn’t care about women. In many societies until the 20th century women were kept out of social circulation.

So it’s a woman who is gathering autistic women together, organizing and trying to fight for funds for help, for recognition — the film lets them tell their stories and you can see how autism affects women. Some of the results of society’s response to this disability (basically social inabilities of various sorts as seen from the ordinary person’s outlook): unemployment, or never being promoted, for women often she does not marry. Loneliness. But there are some women who are successful in the marketplace (so to speak). Not liking travel. The film includes women on the lower end of the spectrum as it’s called. The film brings across how various are the traits but how there is this center, core. Many remain un-diagnosed: this is true of older people in general, but it is apparently still true of girls; their parents don’t make the considerable effort it takes to get someone to diagnose a child as autistic.

It does omit two areas which are explosive: a direct discussion of what sex life is life for an autistic women and what it is like to be an autistic mother. The central topic of bullying is brought up but it is not shown or no one talks of how this affects sex life for girls; very directly; elsewhere I have read autistic women experience far more violence and abuse. The whole area of sexual experience is just about omitted.

Friends and readers,

I continue our journey of life on-line as the pandemic carries on sickening, maiming and killing thousands of people. I passed the six month mark of “sheltering in place,” i.e., I’ve hardly been anywhere but to shop for necessities, hardly had anyone to visit but technicians. My last three or so blogs were all about what you can view or experience here on-line, interspersed by talk of books I’ve been reading with others, sharing here. Well here’s another, this time on Aspergers or autism (the words are not quite interchangeable). Among the many zooms I’ve joined on-line, I’ve joined Aspergers groups — to be candid, I have long been in a FB group for autistic women.  Above is a movie a new Aspergers friend online has recommended to me, and a leader of a group found the vimeo for.

This blog also continue my new goal of keeping these blogs shorter than I once did — so I supply professional shorter reviews instead of writing my own more detailed ones.

Earlier this summer (tempus fugit) I told on my autobiographical blog (Sylvia II) of two fine sources — on this complex very individualized disability: Tony Attwood’s Guide to Aspergers Syndrome and Hannah Gadsby, comedian extraordinaire who also highlights and absurdities and cruelties inflicted on LBGTQ people in society.

Last night I watched one of the videos of Sarah Hendricksx. (Is there any arcane new meaning to putting an “x” at the end of a word.) Very good — actually thorough. She is really a lecturer who softens and makes her material more appealing by her jokes. The jokes are funny (to me) but the reality is she is presenting material about the nature of aspects of my life, traits, existence which are painful to consider so I begin to feel distressed watching her. Yet the humor is salutary and there is much to be learned — especially for a woman. As in so much in our society, when Aspergers is studied, we are told about men as if they are universal, but the condition is different for women. She comes near to suggesting that there is a real gender fault-line in the condition of Aspergers for women and men here too. Hendricksx is better on this than Hannah Gadsby who is really a comedienne mainly and keeps her themes indirect — also about far more than autism. Hendricksx is also more detailed, more literal and thus more helpful

And her well-worth while book:

The difference that being female makes to the diagnosis, life and experiences of a person with an Autism Spectrum Disorder (ASD) has largely gone unresearched and unreported until recently. In this book Sarah Hendrickx has collected both academic research and personal stories about girls and women on the autism spectrum to present a picture of their feelings, thoughts and experiences at each stage of their lives.

Outlining how autism presents differently and can hide itself in females and what the likely impact will be for them throughout their lifespan, the book looks at how females with ASD experience diagnosis, childhood, education, adolescence, friendships, sexuality, employment, pregnancy and parenting, and aging. It will provide invaluable guidance for the professionals who support these girls and women and it will offer women with autism a guiding light in interpreting and understanding their own life experiences through the experiences of others.

This book adds to our knowledge by providing an insightful, sensitive analysis of the pattern of behaviours in females from childhood through to old age… This book endorses my clinical experiences in working with females in the autism spectrum and validates the importance of diagnosis at any time in a person’s life. Therefore I would highly recommend this book for all professionals involved in diagnosis and supporting girls and women in the autism spectrum. — from the foreword by Dr Judith Gould, Consultant Clinical Psychologist and Director of The Lorna Wing Centre for Autism

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I started Laura James’s Odd girl Out this morning.

James is very lucky because she is married to someone who helps support her — actually probably does support her with her income like mine was — I made making ends meet easily and provided money for holidays and books. (As she says, the statistic usually cited is 87% of Aspergers/autistic people have no job or go from job to job and some large percentage do not marry.) She also has two children and is in publishing. Me too on the children! And I have published. I was married for 44 years, now a widow, and I have two fully adult daughters.
James seems to me to exaggerate some of her sensitivities — perhaps for effect, but maybe she does feel all she says. I know she’s right about the horror of the way all people but those forking out literally thousands per ride allow themselves to be treated on planes. She brings in far more than the approach which begins with scientific categories and criteria can. I find I recognize a lot and suggest to other women that here you will find you are not alone.

Very readable – – simply lucid prose. It’s a also a story of the tensions in a marriage and a British middle class woman’s life today. Here is a professional promotional review: British journalist reflects on living with autism.

From childhood, James knew that she behaved and thought differently from other youngsters. Hyperfocused and sensitive to external stimuli, she tried to fit in by copying the behavior of neurotypical girls her age. She also “create[d] imaginary worlds in my head” that suited her need for predictability, logic, space, and calm. Yet James would be in her mid-40s before a psychiatrist officially diagnosed her with autism. Until then, she “genuinely believed most of my problems stemmed from the fact that I was adopted as an infant.” Told from the point of view of a mature adult looking back on and piecing together fragments of her earlier life, the introspective book intersperses the narrative of her present life as a married career woman and mother with reflections and stories about key moments from her past life. Success came only after overcoming great personal difficulties. Lacking in self-confidence, unable to secure a place in college, and fighting to “pass” for normal, James began adulthood with a disastrous marriage. Instead of making her feel complete, that union—coupled with early motherhood—left her feeling terrified and confused. Doctors misdiagnosed James and gave her medication that caused addiction and forced her into rehab. Her second, happy marriage was not without issues rooted in James’ need for constant communication. Motherhood also brought its own challenges, including coping with an inability to deal with her children’s negative emotions. At the same time, autism also contributed to the author’s success in journalism. Her profession gave James structure and the leeway to ask “any question that pop[ped] into my head and…[not be] seen as impolite.” Witty and illuminating, James’ book offers an intimate look into the mind and heart of an autistic woman who learns to understand her difference not as brokenness but as the thing that makes her unique.

A candid and unexpectedly moving memoir of identity and psychological upheaval.

I worry about the book’s final truthfulness though because the blurb at the back “assures” me that at the end she has some kind of apotheosis (too strong a word) in the book, and learns to live with herself much better. Oh right. Twice I was told when someone offered to publish a life story by me (I didn’t even pitch this, they came to one of my blogs) that I must make the story upbeat, must say how I’m a success now. I think such lies make people feel worse, and are much less help than telling the truth.

As I go on with these groups, I will come back here to add titles, explain what’s in books, recommend videos. Now that we are paying attention to girls at last, does not mean we omit the male experience, including those who advocate successfully for themselves and others: Ari Ne’eman Another YouTube of him indirectly addressing the problem of having to deal with a new administration (and president) deeply hostile to helping anyone not rich or powerful, much less disabled people:

Ellen