Jon Adams, a resident of Portsmouth, vividly recalls a day from his final year of primary school. He drew a street scene, devoid of people yet rich in detail, showcasing a talent beyond his young age. This artwork caught the eye of the headteacher, who, in a rare moment of praise for Adams, decided to display it in the school entrance hall. “It was an honour,” Adams reflects, “especially for someone who constantly felt inadequate, having been told so daily.” This early experience underscores the profound impact of misunderstanding and misjudgment, particularly for individuals who, unbeknownst to themselves and others, navigate the world with Asperger’s syndrome, a condition often diagnosed late in adulthood. Understanding asperger’s in adults late diagnosis is crucial to addressing the unique challenges and unlocking the potential of countless individuals.
Adams was instructed to sign his name on the back of his drawing, a simple request that triggered anxiety. He struggled with writing and feared the harsh criticism of his teacher. “Asking for help meant facing ridicule,” he remembers, anticipating the teacher’s scorn: ‘Oh, he can’t even spell his own name, what rubbish is that?’ So, he attempted it alone.
The teacher, upon receiving the drawing, publicly humiliated Adams in front of the class. “He held it up, announced I’d misspelled my name, and declared I’d never amount to anything,” Adams recounts. The teacher then tore up the artwork.
This incident, occurring 45 years prior to Adams sharing his story, contributed to post-traumatic stress disorder he later faced. It wasn’t just the memory of the event, but the lasting impact on his self-perception and worldview. This narrative highlights the damaging effects of an unsupportive educational environment and the persistent sting of being misunderstood and routinely demeaned. “Constant negativity worms its way into your mind,” Adams explains. “Internally, you know you’re capable, creating a painful conflict.”
It wasn’t until April 2013, at the age of 52, that Adams received a formal diagnosis: Asperger syndrome, now understood as a form of autism. A brief online search reveals that Asperger’s, or autism spectrum disorder (ASD), is characterized by challenges in social interaction, communication, and imagination, often described as “flexibility of thought.” However, in individuals like Adams, a prolific artist, the latter aspect appears notably nuanced.
Since 2013, diagnostic criteria for autism have expanded to include sensory sensitivities, such as aversions to specific textures, sounds, smells, and tastes, alongside a strong dislike for sudden loud noises. Adams experiences a complex form of synaesthesia, where senses intertwine; he perceives music as tactile and the colour yellow as a profoundly unpleasant taste, akin to mould.
During public talks about his condition, Adams frequently encounters a recurring question from parents: “My son’s eight, he spends all day in his room with Lego, creates intricate drawings, and avoids social interaction – how do I make him socialize?” Adams’ response is direct and insightful: “You don’t. He has created his own world. He will share it when he is ready. Don’t let him grow up believing his way of thinking and his interests are flaws.”
Adams’ diagnosis journey began with a meeting with Simon Baron-Cohen, founder and director of Cambridge University’s Autism Research Centre, at the Cheltenham literature festival. This encounter sparked a realization in Adams about the underlying nature of his lifelong experiences. Leading up to his diagnosis, his artist biography even hinted at “probable autism.” From May 2012 to June 2013, he served as the research centre’s artist-in-residence. Shortly after, a specialist confirmed his diagnosis, a process involving detailed interviews and questionnaires. “The diagnosis letter stated I exhibited 18 out of 18 autistic traits and confirmed Asperger’s,” Adams recalls.
Baron-Cohen, in a conversation at a bustling Starbucks, reflects on his 35 years of autism research. He recalls his early work with autistic children in 1982 and the establishment of his research centre 15 years later, followed by an adult diagnostic clinic in 1999.
“There was growing recognition that autism wasn’t limited to childhood,” Baron-Cohen explains. “I received increasing emails from adults who felt they never quite fit in, questioning if they might have autism. Adults couldn’t access child and adolescent services, and learning disability clinics often turned away those with IQs above 70. These individuals were a ‘lost generation,’ a term I often used.”
The National Autistic Society estimates approximately 700,000 autistic individuals in the UK – over 1% of the population. This spectrum includes individuals with learning disabilities, non-verbal individuals, and “high-functioning” individuals, including those with Asperger syndrome. Asperger’s, named after Austrian pediatrician Hans Asperger, who studied children he termed “little professors” in the 1940s, is characterized by no significant language delay in early childhood. While Asperger syndrome has been removed from the American diagnostic manual, it remains a recognized term in the UK.
A significant portion, around 20%, of diagnosed autistic individuals receive their diagnosis in adulthood, often categorized within the “high-functioning” group. While national adult autism diagnosis figures are unavailable, anecdotal evidence suggests a rising trend. Baron-Cohen notes a substantial increase in referrals to his clinic, from 100 cases in Cambridgeshire four years prior to 400 in just the first four months of 2016.
Terms describing autism often fail to capture its intricate nature. The umbrella term, autism spectrum disorder (ASD), or autism spectrum condition (ASC), preferred by those who dispute the “disorder” label, encompasses all variations. Lorna Wing, a pioneering researcher, introduced the “spectrum” concept. Baron-Cohen elaborates, “Wing initially meant a spectrum within those seeking clinical help. Now, we understand this spectrum extends throughout society, into the general population.”
The author’s personal connection to autism began with his son James’ ASD diagnosis at age three. Experiences like social differences, fixations, sensory sensitivities, and technological aptitude, initially perceived as unusual, became integrated into their family life. These experiences broadened his understanding of human psychology, both within and beyond the autism spectrum.
However, societal understanding lags behind. Only 16% of autistic adults in the UK are in full-time paid employment. A 2014 study by Baron-Cohen’s team revealed that two-thirds of their adult clinic patients had suicidal thoughts or plans, and a third had attempted suicide. Baron-Cohen emphasizes, “This isn’t inherent to autism. These are secondary mental health issues. Autism is innate, but societal reactions, or lack thereof, lead to secondary depression. This is preventable.”
Following his conversation with Baron-Cohen, the author traveled to Wigan to meet Peter Street, diagnosed with autism at 68, just ten months prior. Street, a humorous and engaging individual, describes his love for conversation, sometimes excessively. “I have this intense urge to talk, almost a pain if I don’t. I describe it to my therapist as being like an overflowing bucket.”
After a brief conversation, Street’s extraordinary life story unfolds. Born in Bolton, his mother, a rape survivor, was taken in by an older man who became her husband and Street’s adoptive father. Growing up isolated, Street describes limited family and few friends. “I’m too much for people, and they are too much for me. I can overwhelm people. As a child, if I made a friend, I’d wait on their doorstep early each morning. People didn’t appreciate that.”
His childhood routines often centred around solitary play in his backyard, using the outside toilet and back wall for football and marbles. “It was wonderful for me, though maybe not for others.” He also frequented cinemas, developing a deep knowledge of Greek mythology and a fascination with Steve Reeves, the Hercules actor. “I absorb unusual information, but struggle with everyday things.”
School was challenging. Teachers were “shit with me,” he says, describing bullying tactics like corner standing, wastebasket confinement, and head-hitting with board rubbers. He attributes his epilepsy, which began at 15, to this abuse. Approximately a third of autistic individuals also experience epilepsy, though the connection remains unclear.
Street left school illiterate. He held various jobs, struggling with complex instructions, before settling into gardening and gravedigging. He married Sandra and had three children. “Sandra is also introverted, mirroring me in a way.”
In 1984, a neck injury led to a three-year recovery, during which he met an English teacher and began learning to read and write. Adult education revealed a talent for poetry.
He shared an anthology of his poems, published in 2009, featuring “Not Being Me,” reflecting the autistic experience of alienation:
Childhood nights were dreams of being a sheep then up and out of a morning, a quick check to see
if by any chance in the night there had been a change of being just like all my friends and not the odd one out
Street began teaching poetry in schools and day centres in the late 1980s, becoming a writer-in-residence at the BBC Manchester in the early 90s. In 1993, he reported from war-torn Croatia. “Autistic people are often said to lack emotion or empathy,” he notes. “I feel too much. Croatia broke my heart.” He recounts distressing encounters: an abandoned 18-year-old refugee, giving his water to a starving woman with a baby, and guilt over eating while refugee children watched.
By 2014, these memories became overwhelming, leading him to therapy. His therapist suggested an autism assessment. “I went along, did puzzle games and story-making tasks, which I couldn’t do. The specialist said I was highly intellectual but on the autism spectrum.”
His diagnosis brought immense relief. “I cried. It was wonderful. My life suddenly made sense. The abuse, the beatings – none of it was my fault. It’s one of the greatest things in my life, after family and Sandra.”
Penny Andrews received her Asperger syndrome diagnosis at 30. She was active on LiveJournal, where an online contact openly wrote about his autism diagnosis process. “He described his journey, the reasons for seeking diagnosis, the procedure, and seeing multiple psychiatrists before referral,” Andrews recalls. “The more he wrote, the more I identified with his experiences.”
Now 35, Andrews also has mild cerebral palsy, a para-athlete specializing in the 100m, with a rigorous training schedule. Sporting a Bowie T-shirt and a Whitby tattoo, she is a vocal presence on Twitter. She is pursuing a PhD focused on academic libraries, data flows, and digital networks in research.
Growing up in Nidderdale, Andrews felt a persistent sense of “wrongness.” “I was clever and supposedly interesting, yet struggled with friendships and often said the wrong thing.”
Autism in women and girls is increasingly recognized. The male-to-female autism ratio is around 5:1, though Baron-Cohen believes this may change as “camouflage” in females becomes better understood. Andrews recalls masking her autism at school.
“You shouldn’t connect more with parents than peers. I didn’t want to play; I seemed aloof. I read Anne Frank at six and discussed the Holocaust. I copied others, mimicking their talk and interests, watching shows like Neighbours and Home And Away. I got a Tamagotchi, like everyone else, but had no interest.”
Teenage social dynamics proved challenging. “Girls are cruel, excluding and pretending to be friends. I understand sarcasm but not insincerity. Boys feigned interest as a joke. They’d invite you out and not show up, laughing nearby. All of that happened.”
Married to Emil for 11 years, Andrews feels fully accepted. “Because he loves me as I am, I am completely myself with him.” Reading emotions can be complex. “If someone is truly upset, I sense it intensely. Too intensely, perhaps. But I miss subtle cues, like when someone wants to end a conversation. I can’t tell if people like me without being told directly, which is difficult.”
Many neurotypical individuals also struggle with social cues, but Andrews notes a difference: “They seem more at peace with this uncertainty. Even with long-term acquaintances, I need explicit reassurance of liking, which can be off-putting.”
Regarding societal understanding of autism, Andrews believes significant change is needed. “Many still don’t believe in it or see it as minor: ‘just friendship difficulties, a bit more anxiety.’ It’s often stressful and painful. Sensory overload can feel like being Tasered.” She cites train ticket flicking, coin jingling, and whistling as examples. “It’s not just annoying; it’s unbearable. Asking people to stop often fails.”
Despite being “high-functioning,” Andrews strongly identifies with the broader autistic community, including non-verbal individuals. “Yes. We have a duty, as speakers, to ensure their care, prevent exploitation, and challenge misrepresentation, like infantilizing labels. From observation, their experiences mirror mine. Non-verbal meltdowns resemble mine, just more physical – an unrestrained version of my internal feelings.”
Jon Adams describes “passing,” a common autistic experience of masking traits to fit in, even at the cost of suppressing aspects of oneself. For Adams, passing led to emotional exhaustion in his late 30s. “Not being authentic takes a toll. Failed marriage, failing relationship, breakdown – it took years to readjust to social interactions.”
Art became his new path, encompassing sculpture and music, often reflecting his life. “My School Pen,” a spiked fountain pen, poignantly captures his childhood struggles.
In 2007, working with teenagers for the Foyer Federation, a colleague asked, “Have you considered you might be autistic?” Adams was unfamiliar with the term. She gave him Mark Haddon’s The Curious Incident Of The Dog In The Night-Time. “I read one page and cried,” he recalls, his voice still emotional.
“You may have flaws, but your fundamental worldview is valid. When everyone says ‘you’re thinking wrong,’ and you know you’re not, but everyone says it, you doubt yourself. That’s the root of depression and low self-esteem. Reading that someone understood was profoundly emotional, visually impactful. I thought, ‘Maybe I am autistic.'” Formal diagnosis followed six years later.
For most adults with late diagnosis asperger’s in adults late diagnosis, formal recognition brings validation but minimal practical change. The National Autistic Society reports 70% of adults lack necessary support. While extreme autism manifestations may be recognized, Penny Andrews points out, “People are likely unaware of the majority of autistic adults, quietly coping with immense stress and sensory overload.”
High unemployment rates among autistic adults are telling. Everyday inconveniences like ubiquitous piped music and poor signage highlight societal neglect of issues significantly impacting autistic lives. While “autism awareness” is promoted, true understanding and practical action are crucial.
Simon Baron-Cohen emphasizes the need for support navigating the world, from shopping to job interviews to social interactions. “In a civilized society, mentorship would be readily available,” he argues.
Adams benefits from the government’s Access To Work program, receiving support from Donna, a support worker. Donna attends meetings, is copied on emails, and assists with social and professional navigation, helping to interpret unspoken cues and advocate for Adams’ working style. “For a three-week project,” Adams explains, “daily check-ins from a manager can be counterproductive. I might need two weeks of mental processing before starting.”
Adams describes “systemizing,” a characteristic autistic trait of finding and immersing oneself in patterns. Music exemplifies this. He uses the iMini app to create electronic music sequences, offering a calming outlet during anxiety. Playing a sequence, he notes its resemblance to 1970s German experimental music. “Tangerine Dream was heaven in 1976 – the repeating sequences were perfect.” He also enjoys Kraftwerk. His son’s Kraftwerk obsession resonates.
“Yes,” Adams replies, recalling 1978. “I bought ELO’s ‘Mr Blue Sky.’ The B-side, ‘Fire On High,’ had a strange intro. I’d replay it endlessly.”
Why? “It aligned me. It made the world feel right, coherent. It felt like part of me, like cosmic alignment.”
He smiles. “Things like that make me feel I’m meant to be here.”
