I've been reading lots of posts and comments online lately about autism being 'overdiagnosed', and whether numbered autism levels might be the answer. There seemed to be a flurry of posts about these issues and as the mum of an autistic daughter with a PDA (Pathological Demand Avoidance) profile, this discussion has been on my mind a lot. So I thought I would share my thoughts on it.
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Last month the government's independent review into mental health conditions, ADHD and autism, led by Professor Peter Fonagy, was published. It runs to over 600 pages (I read the executive summary!), and what it actually says is a lot more balanced than some of the headlines were.
As ITV News reported, the review found that the proportion of people born autistic or with ADHD seems to have stayed broadly stable.What has increased is demand for diagnosis. The panel said they couldn't conclude there is widespread overdiagnosis, stating instead that "administrative prevalence for ADHD and autism among children and young people is now approaching and for some groups already exceeding population prevalence estimates, and is continuing to rise". Their big recommendation was to move from a system that depends on diagnosis to one led by need. Sounds like a good plan in theory, but I think we can all spot the issues with that...
Two main topics of conversation have been doing the rounds alongside the review, and they've been tumbling around my head. The first is that 'everyone's a little bit autistic' these days. The second is that we should start numbering levels of need, helped along by Professor Dame Uta Frith's editorial arguing that the term autism may have become too broad to be useful.
I do understand why people say this. Often it's meant kindly. Someone hears about an autistic trait - liking routine, hating loud noises, getting lost in a favourite subject - and recognises a bit of themselves. It's probably true that most of us can nod along to something on that list.
But sharing a trait is not the same as being autistic.
To be diagnosed, a person has to show differences across all the areas of autism, consistently, and to an extent that affects their everyday life. Charities such as Ambitious about Autism list "everyone is a little bit autistic" as a myth for exactly this reason.
The review itself puts it very clearly:
The trouble is that if everyone is considered to be 'a little bit autistic', then nobody's needs are anything special. It might be an attempt to be inclusive, but it stops the conversation and ignores the fact that some individuals need support.
The second idea is that, if autism has become too broad, we should split it up or number it.
Some versions of this already exist. I've heard that in America three numbered support levels are used. Here in the UK as far as I know, the NHS doesn't usually give these levels at all when diagnosing, though some private assessors do. There's also the term 'profound autism', a term the Lancet Commission proposed in 2021 for people who need care around the clock for life, have an intellectual disability and speak little or not at all.
I completely understand why some families of autistic children are calling for high support needs to be more recognised, and not drowned out by stories of autistic adults with successful careers. Their fight for support is real and it's hard. I know that there's a strong swell of feeling that the voices of 'more able' autistic individuals has taken over the internet and the news reports. But many of those adults and young people would question the term 'able' and if there's one thing I've learned over the years, it's that none of us can easily determine what someone else's support needs are.
And the question that keeps popping into my mind is how would anyone number our girl?
On a good day, she seems bright and able. She's articulate, witty and creative, and sometimes she can talk in great detail about the things she loves. But only to us. She'd rarely feel able to chat with a stranger, unless that stranger shared her interests and could engage in a chat about them rather than pushing for a conversation about her future or an unrelated topic.
Yet she is nowhere near independent in many ways. At 19, she never leaves the house alone, by choice. Because the world outside feels too scary. Everyday things most young adults her age take for granted are not straightforward for her, and some days are far harder than others.
So which level is she? It might depend on the day, the demands, the place and how much anxiety she's already carrying. That's PDA for you: what she can manage changes hour by hour. It's "can't, not won't", and a single number can't capture that.
The PDA Society calls this a 'spiky profile': strong skills in one area, such as verbal communication, alongside big challenges in another, such as sensory processing or emotional regulation. They say this kind of profile can be hard to spot in PDAers, because of the way demand avoidance interacts with their strengths and difficulties. And they point out that it needs to be better understood in education, healthcare and assessment, where decisions are made on what people appear to be coping with. 'Appear' being the key word there.
It's not just parents saying this, either. I've seen plenty of autistic adults making similar points in online forums:
Someone given the old 'high-functioning' label as a child, finding that as an adult they have struggles that would fit all three levels.
Others pointing out that a 'level 1' assessment doesn't mean someone can live independently.
And one observation that stuck with me: many autistic adults find there's no support available to them at all. Is a higher number the magic key to help and support that everyone else is told doesn't exist?
If the people living it can't fit themselves neatly into a box, I'm not sure how a form is going to manage it, or who it is who gets to make that call, especially if they don't know the individual well.
The main worry is that numbering could lead to this: whoever gets the 'lower' number gets told to wait longer, or that they don't need help at all. And seeming able is not the same as coping.
Our girl was diagnosed with autism at two and a half. This blog began on the day a paediatrician first suggested it.
About a year later came our lightbulb moment, when we stumbled across a description of Pathological Demand Avoidance. Suddenly so much made sense. (If PDA is new to you, my post Ten things you need to know about PDA is a good place to start.)
The diagnosis didn't change our daughter in any way. What it changed was us.
It explained why star charts, rewards and consequences - which had worked perfectly well for her big sister - just didn't work for her. It taught us to rephrase demands, offer choices, build in flexibility and always have an exit plan. Without that understanding, I honestly don't know how we could have supported her well.
It also helped us understand why school was such a hard place for her to be. Bells, transitions, crowded corridors, sensory overload and a constant stream of demands, from "sit down" to "get your books out". That's a lot for any child; for a PDAer it can be overwhelming. I've written about all of this on my blog and several other families shared their experiences in my Not Fine in School series.
Without the diagnosis, I suspect she would have been given a very different label: 'naughty'. And we'd have been told we just needed stricter boundaries. As I said when a certain TV nanny suggested 'labels' were not good back in 2022, I never desperately wanted to label my child. A diagnosis shouldn't be called a label, it's actually a signpost.
Back in 2017, when the papers were full of stories of parents 'pushing' for a diagnosis, I wrote that it shouldn't be about labelling a child, but about finding the best ways to support them - and that sometimes the best support only comes with the label. Nine years on, I could have written the same this week.
Not everyone sees it that way. Recently I shared a screenshot of a Daily Mail article headlined "It's not just bad parenting. My son has pathological demand avoidance and this is what it's really like" on my Facebook page. It was a throwaway kind of post from me, with my only text being "One thing I have learned in over 16 years of writing about PDA online, is never to read the comments!" But the post went viral with over 4 million views and the comments came thick and fast. A few highlights:
"PDA can also stand for parental discipline absence."
"We used to call them brats."
"Sometimes it's called not doing as you're told."
"Everything and everyone has a label these days."
"What happens when these children become adults? What happens when they are told no?"
In other words, the parents are too soft, the children are brats, the whole thing could be sorted with a firm word, and labels are just an excuse.
As for what happens when these children become adults - well, I'm finding out! Our girl is a young adult now, and PDA didn't disappear on her eighteenth birthday. PDA children grow up to be PDA adults. We still choose our words carefully, and what has made the difference isn't saying 'no' more, it's the people around her understanding her. Adults with PDA, like Julia Daunt in her book Being Julia, have shown us how much it helps when that understanding is there.
I've heard all these kinds of comments before of course. Back in 2015, Channel 4 showed Born Naughty? and people queued up on Twitter to blame the parenting. I wrote then that this is not bad parenting and it is not being naughty. Eleven years on, the platform has changed but the comments haven't.
What those commenters can't see is the anxiety behind the behaviour. Our girl doesn't refuse because she's oppositional or awkward; it's because she 'can't help won't'. And believe me, if firmer boundaries worked, we'd have used them.
Here are five posts I've found really worth reading on this subject matter, each coming at it from a different angle.
Helen Buzdugan responds to an article suggesting diagnoses have spread from severely disabled children to "highly successful adults". She points out that you can tell very little about someone from the outside: a person can seem to be thriving in one area while struggling badly in another. She also asks why the harms of not diagnosing never seem to come into it. Her conclusion: "Dimming our neighbour's light will not make our own burn brighter."
The Autistic SENCO (Curiosity Led Learning) takes on the idea that people are 'buying' diagnoses. She paid privately for her daughter's dyslexia assessment, but explains she'd paid for an assessment, not a diagnosis. She was not disappointed that her daughter wasn't diagnosed with dyslexia (though her other children are).
Missing The Mark writes gently about the relief of finally having a name for your experience. A diagnosis doesn't make you a different person; it helps you understand yourself and get the adjustments you need. I felt that relief as a parent, and it's lovely to read it described from the inside.
Dr Alex George tackled "isn't everyone on the spectrum?" head on (spoiler: no). Interestingly, he finds support levels helpful: he's level one, but that doesn't make him any less autistic, and autism still has a huge impact on his life. A good reminder that lower support needs never mean no support needs.
NDWise Hub, a UK parent whose son needs round-the-clock support, looks at the 'profound autism' debate from the other end. They question the idea that autism runs in a straight line from 'mild' to 'severe', and explain why the debate is so fraught here, when EHCPs and social care depend on a diagnosis.
I do think that support shouldn't depend on a diagnosis. I'd love a world where schools, local authorities and services simply met children's needs, paperwork or no paperwork. But we're not there yet.
Right now, a diagnosis is the way to help a child be understood instead of punished. It's a way to explain EBSA (Emotionally Based School Avoidance).
I don't think 'overdiagnosis' is happening. I see waiting lists that stretch for years, a school system that too often needs a label before it will help, and families exhausted by having to prove their child's needs again and again. The problem isn't the children, and it isn't their parents. It's the systems around them.
I don't have a magic wand, and I only know my own family. But I do know that understanding our girl changed everything for us - and I'd hate for other families to be denied that because of a headline.
If you'd like to read more about PDA, the PDA Society is the best place to start, and the National Autistic Society has lots of information about autism and diagnosis.
What do you think? Has a diagnosis made a difference for your family, or do you worry about where this debate is heading? Comments are always very much appreciated, and if you have any questions, please feel free to ask below :)
As ITV News reported, the review found that the proportion of people born autistic or with ADHD seems to have stayed broadly stable.What has increased is demand for diagnosis. The panel said they couldn't conclude there is widespread overdiagnosis, stating instead that "administrative prevalence for ADHD and autism among children and young people is now approaching and for some groups already exceeding population prevalence estimates, and is continuing to rise". Their big recommendation was to move from a system that depends on diagnosis to one led by need. Sounds like a good plan in theory, but I think we can all spot the issues with that...
Two main topics of conversation have been doing the rounds alongside the review, and they've been tumbling around my head. The first is that 'everyone's a little bit autistic' these days. The second is that we should start numbering levels of need, helped along by Professor Dame Uta Frith's editorial arguing that the term autism may have become too broad to be useful.
Isn't everyone a little bit autistic?
I do understand why people say this. Often it's meant kindly. Someone hears about an autistic trait - liking routine, hating loud noises, getting lost in a favourite subject - and recognises a bit of themselves. It's probably true that most of us can nod along to something on that list.
But sharing a trait is not the same as being autistic.
To be diagnosed, a person has to show differences across all the areas of autism, consistently, and to an extent that affects their everyday life. Charities such as Ambitious about Autism list "everyone is a little bit autistic" as a myth for exactly this reason.
The review itself puts it very clearly:
"Attention deficit hyperactivity disorder (ADHD) and autism are neurodevelopmental conditions, strongly genetically influenced and present from early life, influencing attention, communication, behaviour, learning and how people experience the world. With the right adjustments many people live full lives but some face substantial difficulties and lifelong high support needs.Having a few traits doesn't make you autistic.
Traits related to these conditions, including inattention, social difficulties and emotional regulation, occur to varying degrees across the population, but having some of these traits, or identifying as neurodivergent, is not the same as having a diagnosable neurodevelopmental condition. Diagnosis depends not simply on the early developmental presence of traits, but on their severity, persistence and impact on functioning.
Recognition of ADHD and autism has risen dramatically, leading to hundreds of thousands of people awaiting diagnostic assessment and many others struggling to access support. Many people also continue to face barriers to timely treatment, increasing the risk that difficulties escalate and become more severe."
On a similar thought process I wrote about PDA years ago in Ten things you need to know about Pathological Demand Avoidance. Lots of people avoid demands sometimes. Many toddlers refuse to put their shoes on and lots of teenagers don't tidy their rooms. That isn't PDA. With PDA, the anxiety is so high that even things our girl enjoyed, like a trip to the park, could become impossible because the demand came at the wrong moment or was one too many that day. There's a need to distinguish between the all-pervasive nature of PDA and general demand avoidance.
It's worth highlighting that last paragraph I quoted above: hundreds of thousands of people waiting, with difficulties getting worse while they wait. That doesn't sound like too many diagnoses to me. It sounds like a very long queue, and a lot of stress and frustration for families while they wait to be seen.
What the report does also acknowledge, is that women and girls were historically often missed and misunderstood in terms of an autism diagnosis:
One of the most important changes over recent decades has been the increased recognition of ADHD and autism among girls and women. Research suggests that at least part of the historical sex difference reflected lower rates of recognition rather than true differences in prevalence.
This is another point very close to my heart, and one I wrote about a few years ago in my post Autistic women and girls, late diagnosis and masking.
The trouble is that if everyone is considered to be 'a little bit autistic', then nobody's needs are anything special. It might be an attempt to be inclusive, but it stops the conversation and ignores the fact that some individuals need support.
Should we number levels of need?
The second idea is that, if autism has become too broad, we should split it up or number it.
Some versions of this already exist. I've heard that in America three numbered support levels are used. Here in the UK as far as I know, the NHS doesn't usually give these levels at all when diagnosing, though some private assessors do. There's also the term 'profound autism', a term the Lancet Commission proposed in 2021 for people who need care around the clock for life, have an intellectual disability and speak little or not at all.
I completely understand why some families of autistic children are calling for high support needs to be more recognised, and not drowned out by stories of autistic adults with successful careers. Their fight for support is real and it's hard. I know that there's a strong swell of feeling that the voices of 'more able' autistic individuals has taken over the internet and the news reports. But many of those adults and young people would question the term 'able' and if there's one thing I've learned over the years, it's that none of us can easily determine what someone else's support needs are.
And the question that keeps popping into my mind is how would anyone number our girl?
On a good day, she seems bright and able. She's articulate, witty and creative, and sometimes she can talk in great detail about the things she loves. But only to us. She'd rarely feel able to chat with a stranger, unless that stranger shared her interests and could engage in a chat about them rather than pushing for a conversation about her future or an unrelated topic.
Yet she is nowhere near independent in many ways. At 19, she never leaves the house alone, by choice. Because the world outside feels too scary. Everyday things most young adults her age take for granted are not straightforward for her, and some days are far harder than others.
So which level is she? It might depend on the day, the demands, the place and how much anxiety she's already carrying. That's PDA for you: what she can manage changes hour by hour. It's "can't, not won't", and a single number can't capture that.
The PDA Society calls this a 'spiky profile': strong skills in one area, such as verbal communication, alongside big challenges in another, such as sensory processing or emotional regulation. They say this kind of profile can be hard to spot in PDAers, because of the way demand avoidance interacts with their strengths and difficulties. And they point out that it needs to be better understood in education, healthcare and assessment, where decisions are made on what people appear to be coping with. 'Appear' being the key word there.
It's not just parents saying this, either. I've seen plenty of autistic adults making similar points in online forums:
Someone given the old 'high-functioning' label as a child, finding that as an adult they have struggles that would fit all three levels.
Others pointing out that a 'level 1' assessment doesn't mean someone can live independently.
And one observation that stuck with me: many autistic adults find there's no support available to them at all. Is a higher number the magic key to help and support that everyone else is told doesn't exist?
If the people living it can't fit themselves neatly into a box, I'm not sure how a form is going to manage it, or who it is who gets to make that call, especially if they don't know the individual well.
The main worry is that numbering could lead to this: whoever gets the 'lower' number gets told to wait longer, or that they don't need help at all. And seeming able is not the same as coping.
What a diagnosis actually gave us
Our girl was diagnosed with autism at two and a half. This blog began on the day a paediatrician first suggested it.
About a year later came our lightbulb moment, when we stumbled across a description of Pathological Demand Avoidance. Suddenly so much made sense. (If PDA is new to you, my post Ten things you need to know about PDA is a good place to start.)
The diagnosis didn't change our daughter in any way. What it changed was us.
It explained why star charts, rewards and consequences - which had worked perfectly well for her big sister - just didn't work for her. It taught us to rephrase demands, offer choices, build in flexibility and always have an exit plan. Without that understanding, I honestly don't know how we could have supported her well.
It also helped us understand why school was such a hard place for her to be. Bells, transitions, crowded corridors, sensory overload and a constant stream of demands, from "sit down" to "get your books out". That's a lot for any child; for a PDAer it can be overwhelming. I've written about all of this on my blog and several other families shared their experiences in my Not Fine in School series.
Without the diagnosis, I suspect she would have been given a very different label: 'naughty'. And we'd have been told we just needed stricter boundaries. As I said when a certain TV nanny suggested 'labels' were not good back in 2022, I never desperately wanted to label my child. A diagnosis shouldn't be called a label, it's actually a signpost.
Back in 2017, when the papers were full of stories of parents 'pushing' for a diagnosis, I wrote that it shouldn't be about labelling a child, but about finding the best ways to support them - and that sometimes the best support only comes with the label. Nine years on, I could have written the same this week.
Not strict enough? What the comments said
Not everyone sees it that way. Recently I shared a screenshot of a Daily Mail article headlined "It's not just bad parenting. My son has pathological demand avoidance and this is what it's really like" on my Facebook page. It was a throwaway kind of post from me, with my only text being "One thing I have learned in over 16 years of writing about PDA online, is never to read the comments!" But the post went viral with over 4 million views and the comments came thick and fast. A few highlights:
"PDA can also stand for parental discipline absence."
"We used to call them brats."
"Sometimes it's called not doing as you're told."
"Everything and everyone has a label these days."
"What happens when these children become adults? What happens when they are told no?"
In other words, the parents are too soft, the children are brats, the whole thing could be sorted with a firm word, and labels are just an excuse.
As for what happens when these children become adults - well, I'm finding out! Our girl is a young adult now, and PDA didn't disappear on her eighteenth birthday. PDA children grow up to be PDA adults. We still choose our words carefully, and what has made the difference isn't saying 'no' more, it's the people around her understanding her. Adults with PDA, like Julia Daunt in her book Being Julia, have shown us how much it helps when that understanding is there.
I've heard all these kinds of comments before of course. Back in 2015, Channel 4 showed Born Naughty? and people queued up on Twitter to blame the parenting. I wrote then that this is not bad parenting and it is not being naughty. Eleven years on, the platform has changed but the comments haven't.
What those commenters can't see is the anxiety behind the behaviour. Our girl doesn't refuse because she's oppositional or awkward; it's because she 'can't help won't'. And believe me, if firmer boundaries worked, we'd have used them.
What other parents and autistic writers are saying
Here are five posts I've found really worth reading on this subject matter, each coming at it from a different angle.
Helen Buzdugan responds to an article suggesting diagnoses have spread from severely disabled children to "highly successful adults". She points out that you can tell very little about someone from the outside: a person can seem to be thriving in one area while struggling badly in another. She also asks why the harms of not diagnosing never seem to come into it. Her conclusion: "Dimming our neighbour's light will not make our own burn brighter."
The Autistic SENCO (Curiosity Led Learning) takes on the idea that people are 'buying' diagnoses. She paid privately for her daughter's dyslexia assessment, but explains she'd paid for an assessment, not a diagnosis. She was not disappointed that her daughter wasn't diagnosed with dyslexia (though her other children are).
Missing The Mark writes gently about the relief of finally having a name for your experience. A diagnosis doesn't make you a different person; it helps you understand yourself and get the adjustments you need. I felt that relief as a parent, and it's lovely to read it described from the inside.
Dr Alex George tackled "isn't everyone on the spectrum?" head on (spoiler: no). Interestingly, he finds support levels helpful: he's level one, but that doesn't make him any less autistic, and autism still has a huge impact on his life. A good reminder that lower support needs never mean no support needs.
NDWise Hub, a UK parent whose son needs round-the-clock support, looks at the 'profound autism' debate from the other end. They question the idea that autism runs in a straight line from 'mild' to 'severe', and explain why the debate is so fraught here, when EHCPs and social care depend on a diagnosis.
So where do I stand?
I do think that support shouldn't depend on a diagnosis. I'd love a world where schools, local authorities and services simply met children's needs, paperwork or no paperwork. But we're not there yet.
Right now, a diagnosis is the way to help a child be understood instead of punished. It's a way to explain EBSA (Emotionally Based School Avoidance).
I don't think 'overdiagnosis' is happening. I see waiting lists that stretch for years, a school system that too often needs a label before it will help, and families exhausted by having to prove their child's needs again and again. The problem isn't the children, and it isn't their parents. It's the systems around them.
I don't have a magic wand, and I only know my own family. But I do know that understanding our girl changed everything for us - and I'd hate for other families to be denied that because of a headline.
If you'd like to read more about PDA, the PDA Society is the best place to start, and the National Autistic Society has lots of information about autism and diagnosis.
What do you think? Has a diagnosis made a difference for your family, or do you worry about where this debate is heading? Comments are always very much appreciated, and if you have any questions, please feel free to ask below :)
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