There’s been a lot of noise in the media about how recently more and more Autistic people are being diagnosed or identified.
The headlines are often sensationalized, fear-mongering, and imply that “suddenly there are more Autistic people than ever.” However, nothing could be further from the truth, because we’ve always been here (even if we weren’t identified until recently).
Recently, The Guardian published a piece with the sub-heading “There has been a steep rise in the number of people labeled autistic over the last 20 years. Is that down to greater understanding – or overdiagnosis?” The article mentioned above was a piece interviewing Uta Frith, an academic who, despite not identifying as Autistic herself, has recently given multiple interviews, and a paper in a medical journal sharing bold opinions about “what it is to be Autistic, and who should or shouldn’t qualify for a diagnosis” (even though a non-autistic person doesn’t know what it is like to be Autistic, because it is not something they experience).
As an Autistic person, I am tired of these ignorant non-autistic so-called ‘Autism Experts‘.
Personally, as an Autistic person, I don’t think it is appropriate for non-autistic individuals to be the ones defining Autism, when there are plenty of Autistic voices out there who can share what being Autistic is like from the inside.
A non-autistic person can’t know what it is like to be Autistic, because they only know what Autism looks like from the outside looking in, not what it feels like to live as an Autistic person.
To use a metaphor, I know what ants do and how ants behave, but since I am not an ant, I have no clue what it is like to live my life as an ant (and I will never know, no matter how much I study ants).
If ants could communicate with us, we could ask them what it’s like. Unfortunately, we have a language barrier with ants, making this exchange impossible.
Autism is different, because if non-autistic people care to listen, Autistic people often have ways of sharing (even if those methods are less traditional).
While some Autistic people do struggle greatly to communicate, there are plenty of us who, if you bother to listen, are more than willing to share what being Autistic is like… but it often feels as if non-autistic people don’t care to hear what we have to say, and would rather speak over us, instead of including our experiences and perspectives in conversations about Autism.
Sometimes people argue that non-speakers cannot communicate, so we cannot know what their experiences are like.
I personally cannot speak to that experience, because I also don’t know what it is like to be non-speaking (even though I’ve situationally struggled to speak over the years).
Being hyper-verbal and situationally unable to speak is a very different experience from being non-speaking or minimally speaking.
Because being a full-time non-speaker is not my experience, when talking about non-speakers, I like to defer to Autistic non-speakers like Carly Fleischmann (co-author of the book Carly’s Voice and host of the YouTube show Speechless with Carly Fleischmann), Naoki Higashida (author of the book The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism), Niko Boskovic, and many others who have shared their experiences in books, on social media, and multiple other outlets over the years.
Even though there are many great Autistic voices out there (ranging across the spectrum from speaking to non-speaking and everything in between), for some reason media outlets still like to lean on non-autistic people to lead discussions about Autism (even those who hold very outdated ideas), like Uta Frith.
There is a myth that late-identified Autistic people are NOTHING like early identified Autistic people.
In her recent paper, Uta claimed there are “large differences between individuals diagnosed in childhood and those diagnosed later,” without recognizing that many of us no longer resemble who we were growing up.
Frith assumes that those of us identified in adulthood are vastly different from the Autistic people who are diagnosed in childhood, and that people like me, who were late identified, didn’t show obvious Autistic traits when we were young.
She even mused that people like me (who are diagnosed in adulthood) might not merit the label Autistic at all. However, I have grown and changed a lot as I aged (as many Autistic and non-autistic adults do).
When I was younger, I had a much more stereotypical presentation of Autistic traits, except I was hyperlexic, hyper-verbal, and had an advanced vocabulary (because reading and words were my special interest).
While I was very skilled at reading, I lagged in most other academic areas for most of my school years because my skills didn’t translate well into the classroom.
I was disruptive, a kid who was regularly getting kicked out of class for stimming, echoing, singing, making noises, lacking impulse control, and being unable to be still and quiet.
I couldn’t read facial expressions or body language, so I took people’s words at face value. This meant I was vulnerable and got picked on, coerced, and frequently abused by my peers and other authority figures growing up (because I was honest and trusting to a fault). In my early days, it never occurred to me that other kids (or adults) would have ulterior motives and would lie, steal, cheat, manipulate, or pretend to like me.
I had very narrow interests and pretty much only wanted to talk about and learn about them (dogs, cats, and other animals), and was happiest playing or reading on my own.
I enjoyed lining and setting up my toys, books, and art supplies (often by size and color), instead of doing what is sometimes referred to as “imaginative play“.
My teachers noticed I was different, referring me for testing for learning disabilities. They also kept sending me for hearing tests because I wasn’t responding when they called my name in class.
Even though my teachers noticed something was different about me and that I was struggling, my family refused the tests because they didn’t want me to be labeled.
The signs were obvious to my teachers when they measured me against my non-autistic peers. Yet, to my family (many of whom also were unidentifired Neurodivergent people), I was just a bright, understimulated kid.
When I was younger, I resembled many Autistic children one would meet today, but now that I am almost 40, I no longer resemble who I was in elementary school for the most part. Masking accounts for a lot of it, but I’ve also learned many skills as I’ve aged… as many of us do. Regardless, Frith also doesn’t seem to believe Autistic people are capable of masking or camouflaging.
Uta also seems to object to Autism being seen as an identity, and to Autistic lived experiences being platformed in conversations about Autism.
In her paper, Uta complains that “What autistic people write in their autobiographies or portray on social media influences what appears in textbooks and in diagnostic instruments.“
Frith also heavily blames ‘social contagion’ (language mirrored by anti-trans groups) for the rise in diagnosis… and she is partially right, in that a rise in awareness and understanding has led to more Autistic people being identified. However, this is only part of the story.
The reality is that our understanding of what it means to be Autistic has evolved since Frith’s research on Autism started in 1966 (the critera has widened multiple times since 1966 so more people qualify, many parents of Autsitic chidlren are recognizign themselves when their kids are being diagnosed, and because we’re having more conversations about Autism, and more Autistic people have become visible, people know to ask about being assessed) but Uta (who is now 85 years old) seems to be stuck in the past.
Based on the current criteria and on my interactions with Autistic people all over the world through my blog, my opinion is that it is far more likely that Autism is still widely under-identified.
Additionally, this failure and resistance to identify us is harmful.
I spent nearly 30 years of my life not knowing the truth about my brain (that I am and always have been Autistic), and not knowing almost killed me.
Had I not found out the truth, I would have ended my own life years ago and wouldn’t still be here today (a fate that is unfortunately painfully common among Autistic people).
I could have easily become another statistic, had I not been diagnosed and started learning about myself, because being identified and learning about ourselves is lifesaving care for Autistic adults (especially those of us who were missed growing up – the ones Uta thinks shouldn’t be classified as Autistic at all).
For Autistic people, understanding what Autism means to us, our needs, and how to share those needs with others is life-changing, because it empowers us to speak up about what we require to thrive in the world.
So, yes, more Autistic people are being identified, but that isn’t a bad thing.
What it REALLY means is that more Autistic people will have access to lifesaving information, because knowing the truth about ourselves saves lives.
It’s so damaging to deny us access to that knowledge and support, especially considering that many of us are already vulnerable and more likely to end our own lives because of the constant pressure and mismatches we face in the world around us (that are increased exponentially when we do not understand ourselves).
Unfortunately, though this type of self-discovery is life-changing and can literally save lives, late-identified Autistic adults often face a multitude of obstacles that can prevent us from accessing that care.
There are gatekeepers, like Uta Frith and others, who seem determined to prevent people like us from being identified as Autistic.
Even if we manage to be identified, we may not be believed when we ask for support due to people who still think the spectrum is narrower than it actually is (for example, Uta even went so far as to publicly question Chris Packham’s Autism diagnosis because of his ability to communicate). On top of that, there are often limited resources available for us once we’ve been diagnosed (if we can access them at all).
When I was diagnosed, there were no resources available to me, because I couldn’t afford help. Yes, help was out there, but in my case it was either not what I needed or was out of reach.
I couldn’t pay several hundred dollars an hour to see a therapist who could help me figure out what being Autistic meant to me on an individual level, so I was mostly on my own to sort things out.
Frith may object to Autism being an identity, but having a positive understanding of our Autistic (and other) identities is often an indicator of higher self-esteem, confidence, and well-being.
That is why Rebecca Duffus and I created our latest workbook, Autism, Identity and Me: A Practical Workbook to Empower Autistic Adults, because gatekeepers shouldn’t stand in the way of lifesaving knowledge.
This workbook will be valuable for newly diagnosed adults and those wanting to better understand their own unique Autistic identity, as well as the professionals supporting them. The empowering workbook has been designed to help Autistic adults, whether newly diagnosed or self-identifying, develop a positive understanding of their unique Autistic identity.
With a highly structured, interactive, and visual approach, the workbook guides the reader through key areas including focus, routine and structure, masking, sensory experiences, and emotions and energy levels.
The book includes a wealth of tools and exercises with first-hand experiences woven throughout, and offers an affirming framework to encourage and build:
- An understanding of what Autism is
- An understanding of what Autism means to you
- A positive sense of self
- An acknowledgment of things that may be trickier
- A pride in being Autistic
- Tools for self-advocacy and having conversations about our needs with other people
- and MORE!
For a limited time, you can get 20% off when you buy directly from our publisher with code 26AFLY4* at checkout (Expires on 31st March 2027)
Other retailers: https://neurodivergentrebel.com/2026/07/09/get-autism-identity-and-me-a-practical-workbook-to-empower-adults-order-now/
If you plan to order one, doing so before its release date (11/13/2026) helps more than I can put into words.
There is also a children’s version of this workbook, and a teacher guide (for adults helping young people work through these exercises).
Autism, Identity and Me: A Practical Workbook to Empower Autistic Children and Young People Aged 10+
US Children’s Workbook HERE.
US Professional and Parent Guide HERE.
UK Children’s Workbook HERE.
UK Professional and Parent Guide HERE.
