Dame Stephanie Shirley fled Nazi horror and pioneered a successful IT business, but her son’s autism was her life’s greatest challenge
By Jill Escher
The cover of “Let It Go,” a newly updated memoir by the UK’s Dame Stephanie Shirley, pictures the author, regal and poised, in a 3/4 profile highlighting her intelligent expression and neat attire.
Now in her mid-80s, such a portrait of calm reflection would hardly have been possible decades earlier. Her only child, Giles, who had autism, had become “a wild and unmanageable toddler who screamed all the time and appeared not to understand (or even to wish to understand) anything that was said to him.” His incessant bouncing destroyed beds, while his ripping shredded “books, newspapers, money, vital correspondence,” into tiny strips.
As an older child, his outbursts and violent tantrums helped push his agonized mother, for a time, over the brink of sanity. “We had bolts on all the windows and locks on all the cupboards (although most things we possessed were broken anyway). We lived in a perpetual state of high alert.” Overwhelmed by stresses at work and a home, her mind darkened with a sense of the walls of rooms closing in on her, and a full-blown nervous breakdown loomed ahead.
Now, I cannot claim anything in common with luminaries like Dame Judi Dench, Sir Paul McCartney, Sir Elton John or Dame JK Rowling. But Stephanie Shirley is one illustrious British Dame whose tumultous story makes her completely relatable, seeming almost like kin, despite her immense accomplishments and elevated status. If you, fellow Americans, have not heard of her, she is revered as an information technology pioneer, plucky and perservering businesswoman, and autism philanthropist. Allow me to thumbnail her remarkable story, then focus on the autism.
She was born Vera Buchthal, the daughter of a Jewish high-court judge and his Austrian wife, in Germany in 1933. At the age of five, as Nazi barbarism descended on the continent, Vera and her older sister were among the last of the Jewish child refugees placed by their distraught and desperate parents on the Kindertransport to the UK. Vera grew up with foster parents, “a middle-aged, conventional couple” she grew to adore, learned to speak English, and proved to be an excellent student with a sharp mind for math, outpacing even the nuns at her convent school in Sutton Coldfield, outside of Birmingham.
This was a time when girls were not expected to study math, so in what would be the equivalent of high school here in the states, Vera found herself shuttling between her girls’ school and a boys’ school, “the only young woman among hundreds of drooling young men.” It would not be the last time her sheer determination shattered gender barriers.
LET IT GO: My Extraordinary Story, From Refugee to Entrepreneur to Philanthropist. Dame Stephanie Shirley. Penguin Random House UK $19.95
In 1951, Vera and her mother, who had also escaped to England, became British citizens. Deeply bonded to her adopted country, she felt immense gratitude for its people, freedoms, customs and intellectual riches that allowed her not only to survive the war, but also cultivate her talents. In “committing [her]self to the country,” Vera took on her middle name, Stephanie, as her first name, and replaced her German-sounding surname with Brook, after the English poet Rupert Brooke. “I felt that I was also committing myself to repaying all the generosity that the English people had shown me: to living a life that was worthy of their kindness.”
Stephanie found work in Britain’s budding technology sector. Disciplined, detail-oriented and industrious, she proved capable of tackling complicated projects that customized computer operations for a particular purpose, the forerunner to today’s software programming. After marrying her huband, physicist Derek Shirley, she decided at age 29 to start her own company selling software, at a time when no one sold software and she had no experience running a business. Businesses that bought a computer did not wish to “pay for the code to make it do what it was supposed to do,” at that time, huge reels of punched tape. She would hire other programmers — by and large, smart and skilled women who appreciated the flexible hours — on a freelance basis as needed, and thus her company, Freelance Programmers, was born. This was followed by another momentous birth: of her son Giles, in 1963.
Now, since most people reading this review care more about the Giles story than the business story, I will omit the details of her career trajectory except to say that over the decades (and bearing the business name of “Steve,” a male moniker that brought in more contracts) Dame Stephanie built a remarkably successful information technology business that made her and a great many of her (mostly female) employees wealthy beyond their wildest dreams. But true to the book’s title, it was a wealth that she, in large part, ultimately “let go,” due at least in part to her experience with autism.
As with all other parts of the book, Dame Stephanie’s account of Giles’s life is searingly honest, blunt and unsentimental. Her prodigious memory allows her to share details of physical and emotional turmoil, and the costs to her wallet and relationships. Parents of children with severe autism will feel as if they entered a parallel universe reading her words, recognizing her daily hardships and emotional agonies, for example:
“We had long since given up any pretence of a normal, happy family life. We snatched food when we could rather than sitting down together for meals. Derek and I resorted to sleeping in shifts. (You can imagine what this did for our relationship.) But what really frightened me was how the strain was changing me as a person. Emotions and ideas that I neither recognized nor approved of seemed to pop up in my head without prompting.” And about her relationship, “I cannot deny that, at times, our marriage seemed near to collapsing under the strain.”
With Giles in the early 1970s.
After Giles develops epilepsy, the crushing weight of his disability grows heavier. “It is hard to convey to anyone who has not experienced it how harrowing it is to deal with such problems. Your emotional involvement with your child remains as intense as ever — yet you also begin to see him as, in some sense, the enemy. What horror will he come up with next? What disaster will he inflict on you, or himself, next?”
Now, Dame Stephanie never says such things out of disdain for her beloved son, to whom she was clearly profoundly devoted. Instead, you see her exhaustion and exasperation with his mysterious multi-layered mental disorder that caused so much harm to himself and others. She are her husband are desperate, yet powerless, to help him.
The daily ordeals took a toll on her famously sturdy mind, even to the point of contemplation of a suicide pact to “bring this miserable parody of a life to an end.” While some may judge her, most would not: such desperate thoughts are entirely common in families beseiged by severe autism.
Finally, in 1976, she broke, not just from Giles’s situation, but from work, lack of sleep, and other stresses. She writes, in her typical elegant prose: “All those years of fighting, all those years of accumulated emotional scar tissue, seemed to fragment and fall away from me, leaving me as vulnerable and helpless as the five-year-old child I had been the last time my life had changed irrevocably at the railway station [for the Kindertransport], 37 years earlier.”
After months of hospitalization and recovery from her breakdown, Dame Stephanie adopted a sort of “oxygen mask” principle, knowing her welfare must come first, if she was to retain any meaningful capacity to care for her son. For better or worse, they turned to an institutional placement for him. “We had done all we could for him, and all we could do had turned out to be . . . nothing,” she laments in a refrain many parents like her could sing.
Leaving Giles at an institution “was, literally, a question of survival,” she says. “If Giles had not been institutionalized then, I would have been.” Borocourt was “a bleak, joyless place” where patients would sometimes break windows, eat paint, chew clothes, urinate in the wrong place, expose themselves, and lash out a fellow patients. “Put all these challenging behaviour traits in one place… and you get something pretty hellish.”
With money left by her mother, Dame Stephanie eventually purchased a cottage for Giles, a weekend home base for him near the hospital. After she realized she could extract some cash from her share in her company, then called F International, she sold 13% to outside investors, giving her the ability to move Giles to the cottage with a full-time caregiver. Though this plan was met with overwhelming professional disapproval, “Things could hardly be any worse for Giles than they were already.”
The purchase of a larger and more modern house, The Cuddy, followed. After they customized it specifically for his needs, “there was scarcely a breakable thing in the house.” Despite the change of scene, violent outbursts — head butting, hitting, shouting, throwing, exposing himself — continued, but fortunately began to decrease. Indeed, after a while he began to pick up single-word language and the ability to engage in some community activities.
Dame Shirley’s business acumen and inventiveness pushed her to think more strategically. Wanting a sustainable business model and the ability to benefit others like Giles, she made The Cuddy a charity, financed by relevant authorities and a charitable trust she set up around 1993. She could then “pay for The Cuddy out of gross rather than net income, and the whole project would become significantly more sustainable—while the extra resident or residents might see their quality of life improve dramatically.”
Dame Stephanie at Prior’s Court School, a residential school she founded that serves children with more severe forms of autism.
At the starting line of what would become her great passion, philanthropy, she endowed her trust with cash and F International shares, hoping that when sold they would be worth considerably more. As her wealth grew she was able to expand, acquiring other properties for this supported living model. It worked, becoming a “solid, well run enterprise that was changing several lives for the better.”
Later, inspired by Andrew Carnegie’s dictum, “The man who dies rich dies disgraced,” she began to give away more of her fortune, primarily through the establishment of The Shirley Foundation. Among her crowing achievements were the creation of Prior’s Court School, which serves children with more severe forms of autism, and Autistica, a research, support and advocacy charity.
After a seizure in his sleep, Giles passed away at age 35, causing in his mother “the inner howl of despair that reverberates through the rest of your life; the ache that bites and gnaws and never heals.” Perhaps this is a passage only fellow autism parents can feel in their bones, in that despite the upheavals of autism, the connection to our children can run unfathomably deep. “It was like a light going out. Nothing I can write can begin to convey the desolation. The beloved, mysterious, tormented, beautiful being who had been at the centre of my life for 35 years was suddenly and irrevocably absent.”
Yet when past her grief she acknowledged a concurrent relief: “Derek and I had… spent most of our son’s life wondering with dread who he would fare if we died before him. Now we could set our minds to rest on that score.”
In her later years, and continuing today, Dame Shirley championed the role of philanthropy to find answers and solutions to societal challenges. While she never quite attained her goal “to determine the causes of autism by 2014,” she contributed to advances in genomics, sibling risk, neuroimaging, and brain research. She helped build schools and services. And today she aches as she sees the bottomless need for solutions for the massive burden of autism. “Leaving aside the financial implications — and the annual cost of autism to the UK economy has been estimated £32bn - I believe that it is simply wrong to give up in the face of human misery on such a scale.”
Now, it’s hard to square hundreds of Dame Shirley’s language choices (“The catastrophe [of Giles’s autism] had crept up on us…,” “My grand battle has been with autism…,” etc) with the recent Autistica Media Communications Guide that tells journalists to talk “positively” about autism and shun words like “disorder,” but I’ll let that pass; such trendy foibles of the nonprofit she founded hardly detract from my immense admiration for her and her world-changing accomplishments.
Dame Stephanie and Jill Escher in London, August 2019.
By any measure, Dame Shirley’s has been “a life worth saving”—indeed, she has repaid any karmic debt countless times over— and judging by a recent visit (I had the honor of meeting this extraordinary woman in person in London a few months back) her clear-eyed vibrancy and keen wit suggest she has many years of good works left in her.
Learn more about Dame Stephanie Shirley
Her book: on Amazon
Her website: steveshirley.com
Autistica: autistica.org.uk
Prior’s Court School: priorscourt.org.uk
TED talk: here
Jill Escher is president of National Council on Severe Autism, an autism research philanthropist, housing provider to adults with autism, president of Autism Society San Francisco Bay Area, and mother of two children with nonverbal forms of autism.