Four NEW types of autism revealed – what they mean and the signs to look for as 700,000 in UK now have condition

The Sun

a day ago

OUR understanding of autism has come a long way, and now, researchers believe they have found four new distinct autism subtypes.
It could help narrow down the type of help each patient needs - but some experts say it's a potential 'step backwards'.
Around 700,000 people in the UK are believed to have autism - a lifelong condition that affects how they experience and interact with the wider world.
Diagnoses are on the rise; rates are up 787 per cent in England from 1998 to 2018, and experts warn the NHS is becoming 'overwhelmed' by the influx.
Dr Rebecca Ker, practitioner psychologist and clinical director of Carlton Psychology Ltd, tells Sun Health: "Yes, autism rates have increased hugely - by 787 per cent in England over the past 20 years.
2The reality is, that rise is down to our greater awareness and understanding of the condition and a broadening of the diagnostic criteria we use to define it."
Features include difficulties with communication and interaction, repetitive behaviours or limited interests. It can also affect learning and development.
In the last few years, focus has shifted towards acknowledging people's strengths and differences - not their 'deficits'.
Now, groundbreaking research from Princeton University and the Simons Foundation has discovered there may be four distinct autism subtypes, each with its own genetic signature.
The news could potentially usher in a 'huge shift in terms of conceptualising autism,' Dr Ker says.
She says: 'In the past we've understood autism as being highly genetic, so very likely to run in families, and researchers have been looking for the gene that explains that.
'They found one, then another, and we've realised it's much more complicated.
'Instead of finding the one piece to the puzzle, research now suggests actually it could be four different puzzles.'
The scientists analysed data and DNA from 5,000 children with autism.
Grouping 230 traits - including developmental milestones, social skills and repetitive behaviours - they identified four subtypes and even found the brain could be affected by genetic changes after birth.
Dr Ker says: 'That they've managed to group clusters of behaviours with distinct genetics is fascinating.
'But it is early days for understanding how it will impact clinical practice.'
Everyone with autism is different, including their needs.
So in the UK, patients' needs are assessed on a case-by-case basis, rather than by type.
But elsewhere in the world, autism may be labelled based on severity (levels 1, 2 and 3) based on a handbook called the Diagnostic and Statistical Manual of Mental Disorders (DSM), which doctors use to help diagnose mental health conditions.
In the UK, the focus has shifted away from rigid labels or categories.
Dr Ker adds: 'This focus on genetics and subsets feels like a step backwards in some ways.
'There's a potential to oversimplify, reducing people to one of these categories.'
Here are the subtypes explained…
THE 4 SUBTYPES EXPLAINED
1. SOCIAL AND BEHAVIORAL CHALLENGES
These individuals accounted for 37 per cent of the study group and are described as 'having quite typical autism in terms of social difficulties and repetitive behaviours,' says Dr Ker.
That could mean missing social cues, finding social situations stressful, and repeating phrases or physical movements like rocking or hand flapping.
Dr Ker says: 'However, they are reaching developmental milestones at the same age as their peers - walking and talking on time."
Crucially, this group was considered more likely to have difficulties alongside their autism, like OCD, depression and anxiety.
'Existing in a world that's geared up to neurotypical people is anxiety-inducing,' notes Dr Ker, who adds: 'Some of this group might have ADHD as well.
'That pulls them towards spontaneous adventure-seeking and social interaction for the stimulus; however, their autism makes it draining, and they need to plan the heck out of it, and then recover from it.'
Some of the genes connected to this subtype were already on scientists' radar in relation to ADHD.
But Dr Ker says: 'The gene mutation they link to this profile was active after birth - particularly in brain cells involved in social and emotional processing.'
As a result, traits can show up beyond childhood.
In recent years, a rise in awareness on platforms like TikTok has meant more people, like actor Bella Ramsey, are noticing autism traits and getting diagnoses in adulthood.
'These kinds of individuals we might see coming for assessments in early adolescence or later in life, when they self-identify that the things they find hard might relate to the autism spectrum,' says Dr Ker.
SUPPORT: While anyone who suspects they have autism should reach out for support, what works best may be more tailorable to these new subtypes of autism.
Dr Ker says: 'Mental health services are important for this subtype; helping them understand in a really useful and affirmative way how to explain the things they find difficult and uncomfortable, and to help reduce anxiety.
'Mental health services can support depression and low mood, and specialist clinicians who understand neurodivergence can adapt support to be accessible and neuroaffirmative.
'Getting a diagnosis later in life can bring a huge sense of relief, but can also present different challenges.
'Often we have to think about how we reframe things we went through earlier [in life].
'Post-diagnostic support becomes really important.
'These people might need flexible schooling plans; huge secondary schools might not be a good fit for these individuals.'
2. MIXED AUTISM SPECTRUM DISORDER DEVELOPMENTAL DELAY
DEVELOPMENTAL delay is a significant aspect of this subtype, which accounted for 19 per cent of the study group.
Dr Ker says: '[Individuals are] hitting their milestones later and their developmental delay was more likely to be spotted early on, in that the child was developing differently to peers.
'Parents are often very conscious of when their child is walking compared to peers, talking, toileting, whether they're playing in the same way as their peers, playing pretend games, pointing, and interested in the world around them.
'Those differences would be apparent early on.'
This subtype was "considered at lower risk of disorders like anxiety or ADHD' and had inherited genes.
Dr Ker says: 'Mutation genes were active during pre-natal brain development, which would explain its expression early on.'
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SUPPORT: EARLY access to support is vital for this subtype.
Dr Ker says that could include: 'Speech and language therapy, occupational therapy, equipping the family to understand and receive indirect support to make as much of the individual's environment autism friendly, coaching parents to feel confident to understand their children and offering family support.
'For school, it might be that more specialist learning environments were appropriate.'
3. MODERATE CHALLENGES
MORE than a third (34 per cent) of the study group had what was described as 'moderate challenges'.
She says: 'We've moved away from talking about 'severe' or 'less severe', or that linear idea of autism [as a spectrum], because it's a huge over-simplification.
'[But] it can still be really difficult, even if you are able to mask difficulties well.'
She says people may also see these challenges are 'mild', with traits including 'difficulties with social and repetitive behaviours, but not as intensely as described in the earlier groups,' says Dr Ker.
'[Individuals are] hitting their developmental milestones on time, and they're not considered at high risk of the mental health conditions, so [there's] a lower overall impact,' she explains.
But she adds: 'We are still describing significant areas of difficulty [which are] potentially less visible to others.'
SUPPORT: 'IN theory, this subset might have lower support needs,' says Dr Ker.
'Mentoring schemes, having a positive relationship with their diagnosis and having someone to check in with [like a psychologist or clinician] regularly can help this group.'
On a practical, day-to-day level, she adds: 'It might be planning ahead for things we know are often difficult for autistic individuals.'
That could include prepping for 'huge [life] changes, transitions, high stress environments, and environments where the demands are going to be not very autism friendly' - like busy, crowded places that can trigger sensory overload.
4. BROADLY AFFECTED
THIS subtype is the most severely impacted and accounted for 10 per cent of the study group.
'Interestingly, the research says they have genetic mutations that are less inherited from families,' notes Dr Ker, which is in contrast to the Mixed Autism Spectrum Disorder Developmental Delay subtype.
But characteristics and traits are still noticeable very early on, including 'significant developmental delays, communication difficulties and repetitive behaviours', says Dr Ker.
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This may look like not walking or playing as expected, or having significant delays in speech and language development.
They may profoundly struggle with social situations and have highly sensitive responses to certain sounds, lights, textures and more.
'[They] are more at risk for things like anxiety or depression,' adds Dr Ker.
SUPPORT: LIKE those in the second subtype, early support is crucial, says Dr Ker: 'It might be that they have specialist education requirements.
'They might need more practical, basic needs being supported.'
For instance, they may require full-time, life-long care and help with day-to-day activities, meaning their families may need additional, ongoing-support.
The key characteristics of autism - and why they go unnoticed
By Alice Fuller, Health Features Editor
MODEL Christine McGuinness was a 'recluse' for eight years and only left the house at 3am.
Springwatch presenter Chris Packham says it makes him a 'task-centric workaholic who sees problems in everything he does'.
And recently, Bella Ramsey revealed they were diagnosed after struggling to wear thermals on the set of The Last of Us.
But what exactly is autism and why does it seem so different in everyone?
Leanne Cooper-Brown, neurodevelopmental lead at Clinical Partners, tells Sun Health: 'Autism is considered a spectrum, so not all people share the same traits.
'Whereas we used to think of autism as a linear line, we have come to realise that terms such as 'high' and 'low' functioning or definitions of 'mild', 'moderate' or 'severe' aren't helpful and can be misleading.
'Nowadays, we think of autism in terms of the strengths and needs of the individual, which can change over time depending on their environment and support network.'
About 700,000 people in the UK are thought to have autism - that's one in 100.
But research by University College London suggests that number could be twice as high, as many people remain undiagnosed.
Cases are on the rise though. Figures released last year showed a 175 per cent increase from 2011 to 2022.
Dr Selina Warlow, clinical psychologist and owner of The Nook Neurodevelopmental Clinic, says: 'Conversation around neurodiversity is becoming normalised, and that's so positive to see. But more awareness is needed.
'Receiving a diagnosis can open access to expert resources that support autistic people to thrive in society.'
Autism has long been associated with social difficulties, like problems maintaining conversations and forming relationships.
But research published in the journal Cell Press suggested that repetitive behaviours - like rocking or finger-flicking - and special interests - whether it's TV shows or specific animals - are more indicative of an autism diagnosis.
Generally though, experts say the core characteristics include…
Sensitivity - autistic people can be much more or less sensitive to sights, sounds, textures, tastes and smells. For example, they find bright lights or crowded spaces overwhelming, Leanne says. They may also stand too close to others or need to move their whole body to look at something.
Stimming - to manage this sensory overload, some people use repetitive movements or sounds. 'This is called stimming, and includes rocking, tapping and hand-flapping,' Dr Warlow says. 'Though it's something everyone does to some extent, those with autism are likely to engage with it as a form of self-regulation.'
Masking - this is a strategy used by some autistic people, consciously or not, to match neurotypical people, Dr Warlow says. 'It's a way of hiding your true characteristics, and could involve copying facial expressions, planning conversations in advance, or holding in 'stimming' - swapping hand clapping with playing with a pen, for example,' she adds.
Burnout - this is a state of physical, mental and emotional exhaustion and is a common feature in autism. 'Being extremely tired, both mentally and physically, can be associated with the act of masking for a long period of time, or sensory or social overload,' Dr Warlow says. 'Symptoms of autistic burnout include social withdrawal, reduced performance and increased sensitivity.'
Social struggles - socialising can be confusing or tiring for autistic people. They often find it hard to understand what others are thinking or feeling, making it challenging to make friends. Leanne says: 'In adults, autism may present as difficulties with interpreting social cues such as understanding body language or sarcasm, struggling to express emotions or preferring to be alone. This can impact relationships and work.'
Routine - many of us have a fairly regular daily schedule. But for autistic people, this becomes a 'very strong preference for routine', Leanne says. This could be needing a daily timetable to know what is going to happen and when, or having rigid preferences about foods or clothing.
Literal thinking - some autistic people have a literal view of language - like believing it's actually 'raining cats and dogs' or that someone really wants you to 'break a leg'. Dr Warlow says: 'This can result in confusion with figures of speech, irony or indirect requests. 'For instance, being told to 'pull your socks up' might be understood literally, not as a motivational phrase.'
Hyperfocus - often associated with ADHD, hyperfocusing is also common in autistic people. 'It's where you're able to focus intensely on an activity and become absorbed to the point of forgetting about time,' Dr Warlow says. 'This is useful in work or hobbies but can result in neglect of other aspects of life, such as food or rest.'
Special interests - we all have hobbies and interests, but for autistic people, these are so compelling they often want to spend all their time learning about, thinking about or doing them. 'Special interests could include anything from dinosaurs to superheroes, and gardening to music,' Dr Warlow says. 'These usually begin in childhood, but can also form as an adult. 'Chris Packham is an example of an autistic person who turned his childhood special interest in animals into a successful career, becoming one of the UK's best-loved natural world TV presenters.
WHAT THIS COULD MEAN FOR YOU
SO, what could the discovery of these subsets mean for neurodivergent individuals?
Senior study author, Olga Troyanskaya, said of the research: 'Understanding the genetics of autism is essential for enabling earlier and more accurate diagnosis, and guiding personalised care.'
However, Dr Ker has some reservations.
'At the moment, the way we diagnose autism involves a team of specialists,' she explains.
DNA testing is not routine, but spending time with the patient and hearing about their behaviours from family and friends, is.
'There's much more of an emphasis on a lived experience and understanding the role of trauma or their parents' experience,' Dr Ker says.
Fearing that subtyping will reinforce stereotypes, she adds: 'Will it be that someone in a group that's considered more mild finds it harder to access support than they did before?
'A lot of people who've had to fight hard for their diagnosis are always nervous at proposed changes, because their trust in the system is damaged by having to fight so hard for the support they have.
'I think this study will inspire more research, and it may influence applied clinical practice down the line, but people shouldn't be too worried about any imminent, drastic changes.'
The 10-question autism test
TO get an official autism diagnosis, you need to be assessed by a healthcare professional.
But if you think your or your child might have the condition, there is a simple quiz called the AQ-10 that you can use to help support your suspicions.
The AQ-10 was developed by The Autism Research Centre at The University of Cambridge, and it is recommended to be used as an autism screening tool by the National Institute for Health and Care Excellence (NICE).
The assessment tool — used by NHS doctors — does not confirm whether you are on the spectrum.
Instead, it is used to screen people who might be. A version for children is also available.
These questions are not symptoms. They are statements - some are indicative of autism and others are not - in which you agree or disagree on a scale.
For children
For each question, write down if you 'Definitely Agree', 'Slightly Agree', 'Slightly Disagree' or 'Definitely Disagree'.
S/he often notices small sounds when others do not
S/he usually concentrates more on the whole picture, rather than the small details
In a social group, s/he can easily keep track of several different people's conversations
S/he finds it easy to go back and forth between different activities
S/he doesn't know how to keep a conversation going with his/her peers
S/he is good at social chit-chat
When s/he is read a story, s/he finds it difficult to work out the character's intentions or feelings
When s/he was in preschool, s/he used to enjoy playing games involving pretending with other children
S/he finds it easy to work out what someone is thinking or feeling just by looking at their face
S/he finds it hard to make new friends
Only 1 point can be scored for each question. Score 1 point for 'Definitely Agree' or 'Slightly Agree' on each of items 1, 5, 7 and 10.
Score 1 point for 'Definitely Disagree' or 'Slightly Disagree' on each of items 2, 3, 4, 6, 8 and 9.
If the individual scores more than 6 out of 10, they will be considered for a specialist diagnostic assessment.
For adults
For each question, write down if you 'Definitely Agree', 'Slightly Agree', 'Slightly Disagree' or 'Definitely Disagree'.
I often notice small sounds when others do not
I usually concentrate more on the whole picture, rather than the small details
I find it easy to do more than one thing at once
If there is an interruption, I can switch back to what I was doing very quickly
I find it easy to 'read between the lines' when someone is talking to me
I know how to tell if someone listening to me is getting bored
When I'm reading a story I find it difficult to work out the characters' intentions
I like to collect information about categories of things (e.g. types of car, types of bird, types of train, types of plant etc)
I find it easy to work out what someone is thinking or feeling just by looking at their face
I find it difficult to work out people's intentions
Score 1 point for 'Definitely Agree' or 'Slightly Agree' on each of items 1, 7, 8, and 10.
Score 1 point for 'Definitely Disagree' or 'Slightly Disagree' on each of items 2, 3, 4, 5, 6, and 9.
If you score more than 6 out of 10, a healthcare professional will consider referring you for a specialist diagnostic assessment.