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A dual diagnosis of autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) – what are the implications?

A dual diagnosis of autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) – what are the implications?

A dual diagnosis of autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD), both neurodevelopmental differences, is becoming more prevalent now, due to clinicians’ ability to diagnose both conditions under the latest diagnostic criteria. (The older DSM-4 for example specified that an ASD diagnosis was an ‘exclusion criterion’ for ADHD, thereby limiting research in the field – source – Leitner.) The reason why the two conditions may co-occur is unknown, however there’s thought to be some common underlying etiology, as yet unconfirmed.

It does require a very experienced clinician or multi-disciplinary team to carry out the assessment and subsequent diagnosis, as the two conditions presenting together can make diagnosis much harder. But why is it harder to spot an individual with an autism spectrum condition (ASC) AND ADHD – for example, if you’re a teacher or family member? Here’s a theory – is it as if the two extremes of each condition can be softened, or can become less noticeable to outsiders? (Inside, the challenges and conflicts the individual experiences can of course be considerable – but the outer ‘presentation’ can perhaps sometimes appear more typical.) An example of this theory is that autists may typically prefer sticking to their routines and their limitations, whereas those with ADHD may be more impulsive and fearless – the two extremes can potentially mean the individual’s choice at a given time (eg. to climb a high and unknown tree) sits more in the middle; they may be less likely to avoid the activity as it is out of their ‘safe’ and ‘known’ remit of ‘sameness’ (relating to ASC), but also less likely to take a big risk (relating to ADHD / impulsivity).

Autism may be missed if an ADHD diagnosis is given first

female child in a ball pool - illustrating autism article on spectra.blogIt is said that some children with both conditions are unfortunately having their autism missed, if they get an ADHD diagnosis first. In a study in the journal ‘Paediatrics’, researchers looked at around 1,500 autistic children. They found that those who got an ADHD diagnosis before an autism diagnosis were diagnosed with autism an average of three years later than those who got the autism diagnosis first. They were 30 times more likely to get the autism diagnosis when they were aged six or older. (Source – Harvard University).

Let’s look at the key factors of each condition – autism and ADHD

(1)ADHD is defined by impaired functioning in the areas of attention, hyperactivity, and impulsivity. Often, children with ADHD have difficulty focusing on one activity or task; they may be easily distracted; they are often physically unable to sit still. The ‘attention deficit’ wording may be misleading, as this element could be described as an ‘interest’ deficit – eg. the individual can hold their attention easily on something, if they’re interested in it. As with ASC, children with ADHD often have difficulty moving their attention to other activities, when they are asked to do so. (Source – Children and Adults with Attention-Deficit/Hyperactivity Disorder, or CHADD).

(2)Autism is characterised by social and communicative dysfunction, restrictive-repetitive behaviours and sensory challenges. Children with ASD are most likely to have hyper-focus, and may be unable to shift their attention to the next task. They are often inflexible when it comes to their routines, with low tolerance for change. Many are highly sensitive or insensitive to sensory input, like light, noise and touch. They may ‘stim’ eg. make gestures such as repeated arm flapping, or oral stims like tongue sucking. (Source – CHADD). (Read our blog on stimming below.)

Autistic stimming, or ‘self stimulating’ behaviour – calming, satisfying and recalibrating

(3)Autistic symptoms are said to be more ‘stable’ than those of ADHD behaviours, which show greater variability in their presentation. (Source – Pourcain et al. (). It would therefore be normal for someone diagnosed with both autism and ADHD to present completely differently on different days, and of course to feel very different on different days, depending on which condition is dominant and what external factors are present (eg. nutrition / sleep / sensory challenges).

(4)Both conditions/disorders affect the central nervous system, which is responsible for movement, language, memory, and social and focusing skills. (Source – CHADD).

(5)Studies show that up to 50% of individuals with ASD also manifest ADHD symptoms (particularly at pre-school age). Similarly, estimates suggest two-thirds of individuals with ADHD show features of ASD – source – Leitner.)

(6)Anxiety and mood disorders, although highly prevalent in those with ASC alone, are even more prevalent in individuals who have ADHD. (Source – Lipkin et al).

A dual diagnosis

Children playing - for autism article on spectra.blogThe issue in terms of diagnosis is that both autism and ADHD often include difficulties in attention, communication with peers, impulsivity, and various degrees of restlessness or hyperactivity. Both conditions can cause significant behavioural, academic, emotional, and adaptive problems in all settings.

However in our minds here at Spectra.blog, having both conditions does not necessarily equate to twice the challenges. Maybe just a different set of challenges! There are perhaps positives to be gleaned from having autism AND ADHD, over having autism on its own, in terms of some of the restrictive and limiting elements of autism being potentially reduced at certain times, when the more impulsive and sociable elements of ADHD are dominant.

Warding off anxiety

We must be upfront. It is proposed that there’s a risk for ‘increased severity of psycho-social problems’ (depression and anxiety etc), with a dual diagnosis of ASC and ADHD. (Source – Gadow et al., 2004; Yerys et al., 2009). However, having an understanding about the conditions at an early age (for the individual) surely helps families and educators (and the autist themselves) to manage their challenges, in order to ward off such problems? (Eg. talking therapies like CBT, mindfulness techniques, dietary support or management, and skills training to help cope with daily life, eg. ‘social skills’ training via a school programme.)

In a study titled ‘Anxiety and Mood Disorder in Children With Autism Spectrum Disorder and ADHD’, it was reported that anxiety disorder and mood disorder, while very common in ASD, are even more common when children also have ADHD. Knowing in advance that anxiety and mood disorders are a big risk factor for individuals with ASC and ADHD means interventions and supports can be given in advance, to help promote good mental health. Adaptions can be made and demands can be reduced, in order to prevent anxiety in the individual. It is a good idea for the autist themselves to gain an understanding of their conditions, how they present on different days (eg. which condition is more dominant, and how that feels), and also what external factors (food, sleep etc) are contributory.

Medication

female child - for autism article on spectra.blogMedication to help readdress the chemical imbalances of ADHD in older children or adults may be suggested/prescribed, however it is said to have the potential to be LESS effective for individuals with ASC AND ADHD, and may cause more side effects, including social withdrawal, depression, and irritability, as opposed to when the medications were used to treat ADHD alone. (Source – CHADD). The National Institute for Health and Care Excellence (NICE) recommends that the first steps in treatment for ADHD for young people include help with behaviour and stress management as well as educational support – children under school age should not be given medication for ADHD, they advise. (Source – NAS.)

Does having ASC and ADHD ‘buffer’ the conditions somehow?

We would have to collate opinions of individuals with both conditions, in order for us to comment fairly (and we actively invite them to – if you have autism and ADHD, please comment, or get in touch!). But surely this duality of ASD and ADHD has the potential to provide some kind of ‘buffering’ effect, in terms of reducing extreme or unsafe behaviours? In ADHD children, when the hyperactivity and impulsivity would be more noticeable, this ‘buffering’ element could perhaps be beneficial to an individual’s safety; eg. if the impulsivity of ADHD was offset somehow by a more rational and logical mindset.

Having both conditions, autism and ADHD, can however mean that outsiders like educators and extended family members can’t initially see that the behaviours the person has are atypical. Eg. a dual diagnosis of ASC and ADHD can presumably mean the individual could present more like a neurotypical (NT or non-autistic) person. It doesn’t mean they feel NT inside of course, or that their challenges are reduced.

ADHD, like ASD, is widely said to be a lifelong condition, however the characteristics may alter with age, eg. the hyperactivity element is said to be much more common in children than in adults. Some adults report a large decrease in symptoms of ADHD as a person ages, however this could be due to their own management of their challenges. This reduction in overt signs leads some experts to propose that ADHD isn’t lifelong; however the general consensus is that ADHD DOESN’T GO AWAY.

What is the benefit of clinicians being able to diagnose ASC and ADHD?

A dual diagnosis of ASC and ADHD potentially allows for more efficient clinical management of such individuals, and ‘clears the way for a more precise scientific understanding of the overlap of these two disorders’  – source – Leitner.

As we have described, it allows the individual to gain an understanding of their neurology, in a way that many NTs do not have – after all, anxiety and depression are prevalent across the population, eg. across all neurologies. Perhaps understanding one’s own neurology, in the way that many autists do, is a benefit in terms of safeguarding mental health and knowing how to administer ‘self-care’? (Read our blog on the Spoons Theory, for more info).

The emotional cutlery drawer of spoons, and the ‘social hangover’ (ASD, ASC, Asperger’s)

Lining toys up can be linked to autistic traits.

Lining toys up can be linked to autistic traits.

If any parent or educator is concerned that a child is exhibiting disproportionate levels of anxiety, plus a kind of ‘double-sided personality’, with moods that are very cyclical, as well as the usual signs of autism like social and communicative issues, repetitive behaviours (like lining toys up, in our photo),and sensory challenges, it may be worth investigating the possibility of a co-morbid ADHD diagnosis too.

Or at least, initially keeping a diary of signs and behaviours, and external factors.

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Neurologies / Disorders / Conditions.

The information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!

Read more on co-morbid autism conditions here –

 

Co-morbidity and autism spectrum conditions, or ASCs (ASD, Asperger’s)

Why are autists irritating to other individuals? Examining: confused first impressions; NTs’ reluctance to interact with ‘different’ people; as well as autists’ quirks & behaviours, and ‘failure to be neurotypical’

Why are autists irritating to other individuals? Examining: confused first impressions; NTs’ reluctance to interact with ‘different’ people; as well as autists’ quirks & behaviours, and ‘failure to be neurotypical’

We wanted to write an article about not only interactions between autistic individuals and the people around them (of any neurology); but more importantly, how we as autistics deal with these interactions.

Specifically, this article looks at some of the negative aspects of communication, when you are autistic. Sorry to focus on the negative, for a moment – but it warrants confrontation and consideration!

“Other people of all neurologies may find you as an autistic individual irritating; it’s a bitter pill to swallow, when you’re just being yourself…”

Two men walking, to illustrate autism articleA difference in processing mechanisms (and therefore communication styles) is one of the key facets of being autistic, and it goes hand-in-hand with challenges in the field of socialisation.

Let’s be blunt here – if you are autistic, other people of all neurologies, not just neurotypical (NT), may find you odd / quirky / annoying / irritating. It’s a bitter pill to swallow when you’re just being yourself. 

Here’s why I think autists can seem irritating to other individuals: (Read about the author of this blog HERE).

First impressions. As detailed further below, autistics can be fairly expressionless, or produce looks that are difficult to interpret by neurotypical individuals (NTs). This means others’ first impressions of us can be confused, and we may appear rude, or not interested in making a connection.

NTs’ ‘programming’ – described by disability rights advocate Aiyana Bailin as follows: “One of the biggest social difficulties faced by autistic people is neurotypical people’s reluctance to interact with those they perceive as ‘different’.”

Our quirks – for example, an autist’s hyper-focussed attention to detail, their focus on justice and punctuality, or a special interest that they seem over-interested in, to others.

Our behaviours – eg.: an autist who stims when others see it as being inappropriate set them out as being different or odd. A dis-interest in social chit-chat and conventions seems distant. Our differences in processing mean we may ‘lose’ key words en-route from brain to mouth, or miss a conversation’s meaning.

It’s Not OK of course. It’s not OK for autists to constantly feel belittled, or that as they can’t get their interactions ‘right’ with people, what’s the point of trying? It is not OK for NTs to roll their eyes at their autistic colleagues if they’re pedantic about a certain issue, and it’s not OK to leave the autist out of a workplace lunchtime drinks session, because the autist ‘goes on about’ a special interest longer than their peers may do. But it happens. And it is foolhardy not to acknowledge that these interactions and challenges happen. More than that, as an autist, knowing WHY people are irritated by us helps us understand the process, and feel less of a failure. Communication is a two way street, and there are simply many mixed messages and social communication differences going on at any given time.

(And, it isn’t just peers who make such observations –  a TEACHER in the USA recently awarded an 11-year-old autistic boy the ‘most annoying male’ award, at an Indiana school.

Akalis Castejon is non-verbal, and reportedly, it was a special education teacher at Bailly Preparatory Academy who gave the tongue in cheek award.)

First impressions

It has been proposed that a lot of the beliefs we hold about people, and the feelings we have about them, may be made within just a tenth of a second of meeting them; the way we approach conversing with people is almost subconscious.

A side on image of a white female used to illustrate autism articleOne study by Princeton psychologists in America studied judgments from facial appearance, focusing on attractiveness, likeability, competence, trustworthiness, and aggressiveness. It concluded that there’s a fraction of a second’s time to make such judgements. BUT, autists have difficulty making appropriate facial expressions at the right times, according to a 2018 study on autistic facial expression, which used analysis of 39 studies. ‘[Autistics] may remain expressionless, or produce looks that are difficult to interpret,’ reported Spectrum News.

Everyone essentially gets a ‘feeling’ about somebody upon meeting (or just observing them), and we choose to converse with them, or we choose to avoid them – this is happening in a split-second. Let’s re-visit the American study on attractiveness, likeability, competence, trustworthiness, and aggressiveness. The autistic individual’s lack of expression is likely to be one reason why, based on first impressions, other individuals may not get a clear impression of whether the autist is likeable.

After the first impression – more reasons why neurotypicals may be irritated by autists

Autistics are almost universally used to being treated without respect by many people around them (again, this is NOT OK, but it happens); and to be blunt, we autists CAN annoy people.

If for example, as an autistic, you are the organised, scheduling-obsessed Aspie (Asperger Syndrome) type, other people, especially neurotypicals, may sometimes find your hyperfocussed attention to detail and focus on justice and punctuality overwhelming. Their priorities are just different At That Moment In Time.

Conversely, if you’re an autistic who lacks some executive functioning skills, and for example struggles to keep your house as tidy as you would like, or is challenged by punctuality, other people may feel that you lack personal pride, or are too selfish to even get to a venue on time. (They won’t potentially see or understand the challenges you faced getting to the venue at all, or maybe even getting dressed, getting up that morning and stringing a coherent sentence together. They’re also unlikely to consider the downsides of the interaction, and the autistic social hangover you may experience thereafter).

It works both ways – NTs can be annoying too

It works both ways of course – if you are an autistic individual on a fast processing day, planning, scheduling, imagining and ruminating to a fast-paced musical soundtrack in your head, you will probably find the typical (but relatively low, when compared to yourself) processing speed of the neurotypical people around you infuriatingly slow.

(Read our blog on Fast Brain Days directly below..)

Aspie-superpower days – why autists may be on an ‘autistic spectrum within a spectrum’? We look at the different ‘autistic’ days…

And as a general rule, on this Fast Brain day, you may find the incessant need of others to chitchat and pass the time of day over trivial matters an annoying form of Time Stealing; especially if you are feeling sensitive and overwhelmed. It is as if one person’s on slow-motion, and one’s going super-fast – and the ‘slow-mo’ person can seem infuriating, and their reactions and mental connections infuriating. (If the autist is the one on ‘slow-mo’, this can probably seem frustrating too, from others’ points of view.)

Belittled and bullied

Autistic people, like many underrepresented groups, are often marginalised, belittled, ignored and even bullied. And our combined penchant for repetitive processes and our hyperfocus on certain things, which could be described by other people as ‘going on about something’ or obsessing about something, means another form of bullying can take place, if our actions seem annoying or irritating.

This bulling is the belittling or disparagement of our feelings and needs. Examples include: ‘Come on, it’s not that important, pull yourself together.’ ‘Stop going on about it, there’s other people in the world with bigger problems…’ etc etc. Belittling or squashing someone’s emotional responses regularly just because behaviourally they don’t fit into the ‘norm’, is an every day occurrence for autists. And it can become bullying, if it is repeated regularly.

Cloud cuckoo land

Two females talking _ to illustrate communication between NTs and autistics: ASC ASDIn an ideal world, and this is something many autism and advocates rightly press for, there would be widespread acceptance of people of all neurologies, as well as ethnicities, abilities and genders – we would all be accepting of each other and our quirks, we would make exceptions, we wouldn’t hold grudges, we wouldn’t make snap judgements, we would ‘let things go’, and the world would be a wonderful place whereby everyone was respectful. NTs wouldn’t be irritated by autists who are just being themselves, and little boys with different neurologies would not get presented with patronising ‘awards’ by the teachers who are there to educate and inspire them!

However, this is not currently the case, and seems unlikely to be the case, even as many individuals are being enlightened about what autism is, and how autistic individuals should be respectfully treated.

A double element of social and communicative difficulties

(A further complication that should be noted regarding communication is that autism runs in families, and autistic individuals are often naturally drawn to other neurodivergent individuals as friends and partners; so there is often a double element of social and communicative difficulties going on between the autist and the other individual, if they are autistic or neurodivergent too! Eg they may be battling their own communication challenges, and their own sense of justice, and being right!)

How can we improve this mis-communication?

Autistic individuals may develop a set of social skills or ‘mask’ that helps them fit in with others,.

Autistic individuals may develop a set of social skills or ‘mask’ that helps them fit in with others – READ MORE BELOW.

It seems like such a long journey to get (as a society) our forms of communication and our understanding of different neurologies right. For example, autists who are panicked, stressed or overwhelmed may show behaviours that are thought to be aggressive, leading to many instances of police involvement for simple matters that could have been prevented with some autism staff training.

So, what to do about this issue of communication, especially if you are an undiagnosed, or a late diagnosed autistic individual? You will almost certainly have spent your life feeling different – many describe it as being like an alien on the wrong planet – and perhaps you will have spent years constantly trying to fit in and appease people, wondering WHY you’re annoying others, and not really knowing why.

(Masking is of course a massive and concerning issue, leading to many mental health issues for autistics, or at the very least, health concerns, because in order to fit in, many autistics camouflage their difficulties, and essentially try to appear more neurotypical.)

 

Autistic masking – everything you wanted to know about ‘passing’ or ‘camouflaging’ as an autist

Many autistic individuals attest to feeling a widespread sense of failure

A sense of needing validation, or trying to appease people, is second nature to a lot of autistic people; the author of this blog has spent her whole life like this, with a sense of: ‘I don’t like confrontation, I want to please.’ Personally speaking, I generally try to show respect other people, hence I feel a great sense of injustice and hurt when other people don’t respect me back, or take into account my feelings. Often, I know from their response I have annoyed them, but I am not sure how. Literally by not saying a word, or by saying a word, but obviously the wrong one, I have irritated someone, when all I wanted to do was go about my day! This feeling is commonplace, and leads to a widespread sense of failure – many autistic individuals will attest to feeling like this.

A leaning to victimhood

I think what we are feeling in such instances is a failure to be neurotypical, which of course can never be achieved. One of the only ways to deal with this leaning to victimhood (‘Why am I always getting it wrong? Why do my friends and family not understand me? Poor me….’), eg. feeling that one’s feelings are being ignored, is to develop a Sod It attitude. (You can use a stronger word here, at least in your head. Sometimes, the strength of curse word can actually help with the personal strength that’s required!)

Yes (like all humans!), autistic people can be challenging, irritating and annoying, due to general miscommunication and preconceptions between multiple parties; and yes, other people often do not understand our intent; and yes, our quirks and our behaviours can lead to mistreatment. But if people are doing this on a regular basis, whether they be associates, colleagues, friends, family members, partners or whatever, maybe it would be beneficial to take ownership of one’s life and choices, and in the words of Keala Settle, say This Is Me. (‘I’m marching on to the beat I drum; I’m not scared to be seen, I make no apologies, this is me…’ ‘This Is Me’, by Justin Paul / Benj Pasek.)

This Is Me

Woman with eyes closed _ to illustrate article on communication between NTs and autisticsIt’s our nature as autistics to ruminate on things – our neurology needs repetition, and thrives on cycles; therefore, if people have treated us badly, it’s common to ruminate on the situation. This cyclical issue means we can end up constantly using a negative voice about ourselves, and almost substantiating or validating the treatment that we have been given. When in fact, what would really help is to put the matter to bed, move on, accept that people do not necessarily understand or support our autistic selves, and focus on being the best we can be. Being ourselves, with authority; and that Sod It attitude.

Most autistic individuals as they learn more about autism themselves, endeavour to educate those around them about autism. This is partly to make their own lives easier and enlighten their friend or family member, but in general, also to spread the word and educate the wider community about the differences between NTs and autists, simply to provide understanding.

Autistics do matter, we are valid, and we do deserve respect!

That is why so many blogs like this one exist, as autistic advocates strive to help develop further understanding, acceptance and awareness of autism. However, if after this stage of enlightenment, loved ones or friends are still treating you badly as an autist, citing you as being irritating and annoying, or not being supportive of what is important to you, or are being dismissive of your needs as an autist, is it time to break some ties? (Of course, where friends and family are concerned, this is easier said than done, and may require professional help; for example, talking therapies.)

But really, we do deserve better – it is time for autistics to take ownership of our needs and use this Sod It attitude. We do matter, we are valid, and we do deserve respect!

To conclude

woman in black and white - to illustrate autism article re black and white thinking stylesSo to conclude, we started this article by proposing that autists can seem irritating to other individuals, due to confused first impressions, neurotypicals’ reluctance to interact with people they perceive as ‘different’, as well as autists’ quirks and behaviours that don’t seem typical, or to ‘fit in’ with the majority.

And we haven’t suggested any ‘tools or tips’ for appearing less annoying or irritating; rather proposed that accepting one’s differences and developing a Sod It attitude is sometimes key to moving forward, and being accepting of one’s autistic self.

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Neurologies / Disorders / Conditions; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!

Patterns, sameness and hyper-focus – the autistic special interest, or obsessive thought process

Patterns, sameness and hyper-focus – the autistic special interest, or obsessive thought process

(Our opening picture shows Ethan Fineshriber, a leading American martial artist with a second-degree black belt, who fights in the Extreme Martial Arts black belt boys’ division of the American Taekwondo Association. Pic by the ATA.)

One common trait among autists is an autistic special interest, or obsession. (Although the word obsession can have negative connotations – quite rightly so, in some instances of course!); so ‘hyper focussed interest’ is maybe a nicer phrase).

Repetitive behaviours and rigid thought patterns are after all a key element of Autism Spectrum Neurologies and Asperger Syndrome, and were together part of the ‘triad of impairments‘ that was used to describe the main challenges that autists face. So it’s no surprise that autists can become hyper focussed on a subject.

Repetition and patterns 

Anne-Hegarty – pic by ITV

Autists tend to thrive on repetition and patterns, so anything with a regular element to it appeals to the autistic brain; for example collecting certain items. The ‘collection’ and ‘special interest’ elements often intertwine, meaning autists develop real expertise in their area of interest. (Collecting information can become an interest in itself, for example enjoying ‘quizzing’, like TV’s Anne Hegarty.)

Many autistics go on to become leading experts in that field, and if extensive practise is required, for example to perfect a sporting discipline, again the autist’s penchant for repetition serves them well (like Ethan Fineshriber, pictured.). It’s not uncommon for the interest to be slightly off field or unusual (in the eyes of NT people especially).

When obsessions turn ‘unhealthy’

So, what of the word obsession? This sometimes signifies the interest has reached unhealthy levels – but in whose eyes?

There are many instances where a special interest (in someone of any neurology, not just in an autistic person), becomes unhealthy – one example is computer gaming. Professor Tony Attwood at his 2019 ACAMH ‘What you need to know about Autism’ presentation touched upon the subject, explaining that while computer gaming can be a tool to help cope with anxiety, and is a useful ‘thought blocker, gaming can be very addictive, and that working with the individual before they get to an obsessive or addicted level is key. For autists who struggle with ‘real world’ socialisation, the non-face-to-face world of gaming can be very appealing.

(An obvious route to support expertise in gaming, or computing in general, is to embark on a career in the field. This allows the autistic individual to further their studies but keep up the interest. Thank goodness Satoshi Tajiri, creator of Pokemon, maintained his special teenage interest in arcade games, as he now has a very popular and successful business empire. (Silicon Valley in the USA is awash with autistic individuals, and they’re often specifically recruited).

Unhealthy patterns of autistic behaviour

Child - to illustrate editorial detailing that Skin picking, also known as dermatillomania, can be an autistic behaviour.Sometimes, obsessive behaviours can lead to unhealthy patterns such as counting calories and eating disorders, or self medicating with alcohol or drugs. (Sterotypies’ like trichotillomania (hair pulling) and dermatillomania (skin picking) can also develop, which can be unhealthy).

It is therefore important for families to be vigilant for any mental health or repetitive / addiction-type issues, and involve relevant specialist clinicians.

Obsessions or hyper focussed interests can also extend to people, and this can also sometimes be unhealthy – eg. forming an attraction or relationship that is unrequited.

Autistic special interests – a haven of safety and expertise

However, for the most part, special interests are just that – a haven of safety and expertise. A joy! A feeling of validation! A sense of having found a tribe (of similar enthusiasts)! Autistic special interests are often cause for celebration. 

Professor Tony Attwood at his 2019 ACAMH ‘What you need to know about Autism’ presentation said that autistic special interests can be:

A means of relaxation, pleasure; [A way of] using knowledge to overcome fear; [A way of] keeping anxiety under control; [A way of] ‘thought blocking’; An energiser when exhausted or sad; A way of offering motivation and conceptualisation.

Left: Chris Packham, pictured promoting his ‘Asperger’s and Me’ documentary. Pic by the BBC.
As autists struggle with communication and socialisation to varying degrees, an interest can also be a way of meeting like-minded people. It can introduce new social interactions and develop social skills, and boost the individual’s confidence. Like many things, a special interest in an autistic individual can be cyclical, eg can change and be replaced over time. So if parents are concerned that a child’s collection is unusual, it may pass. (Or, it may develop into a thriving career, like naturalist and TV presenter Chris Packham, who was obsessed with the natural world as a child. Chris built up many collections that others may have thought odd, like animal remains).

Stuck in a loop 

Another element which falls under the same category is obsessive thought patterns. Autists are often accused of ‘not letting things go’, or ruminating over something that seems inconsequential to others. (This can link to obsessive compulsive disorder or OCD; which can be a co-morbid condition of Autism Spectrum Neurologies.)

READ MORE HERE – 

Co-morbidity and autism spectrum conditions, or ASCs (ASD, Asperger’s)

Whilst this ‘stuck record’ may be frustrating for others, (eg. if the autistic repeatedly talks about and frets over a conversation they had, and wonders if someone was upset; or is feeling troubled by a confrontation when they felt bullied, and continually verbalises their feelings); it’s crushing for the autist.

The thought process does become like a loop or stuck record, and continually plays, intruding on everything else. It can lead to impulsivity – eg ‘having it out’ with a person, making an official complaint about a service, or unnecessarily breaking ties with a friend or colleague.

There’s no definitive way to break the autistic pattern or cycle, although training one’s brain to recognise ‘stuck’ patterns can help. (For someone of any neurology!)

For example-

Recognising other accompanying stress-related signs, such as feelings of anxiety, butterflies in the tummy, higher heart rate, etc. Or an increased need to stim. If one identifies the ‘stuck record’ as a sign or symptom, it can be easier to look at it objectively. 

Taking a set number of deep breaths and repeating a reassuring phrase. 

Changing the environment, even if it’s moving to another room. (If sensory issues are exacerbating things, a quieter or less busy area may be beneficial.)

Tony Attwood’s disparagement humour. Good-natured fun, or bullying, exploitative and offensive?

Undertaking some exercise, even a brisk walk, or jogging on the spot, to physiologically alter one’s state. 

Using some kind of sensory activity to distract the brain, maybe using pressure, like a standing press-up against a wall, or a press-up in the floor. Similarly, bouncing on a trampoline or hitting a punch bag can help with recalibration. 

Writing down the issue on paper and acknowledging that it’s now ‘out’, and has been dealt with. (One could even create a worry postbox for the letter – ideal for children.)

‘Stop going on about it!’

For a third party, it is rarely useful to tell the autist that their issue is annoying. (Eg. ‘Stop going on about it! It doesn’t matter, surely?‘). Sometimes with a child, it can be useful to let the ‘loop’ run its course, or help them with distraction techniques and mindfulness.

In anyone (of any age or neurology), helping them work though the obsessive thought, and find a solution, can help. Identifying the issue on a traffic light system of concern (red, amber and green), or a ‘cool to hot’ temperature gauge of concern, may benefit the autist, in terms of self regulation. Keeping a diary may also help, especially as a form of reflection, and to recognise that a former issue is now rectified.

It’s important for third parties to try to respect the individual’s neurology, and accept that patterns, sameness and hyper-focus are usually key aspects of the autist’s personality and make-up. And if you can’t beat ’em, join ’em; maybe it’s time to learn more about the special interest too?!

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Neurologies / Disorders / Conditions, or Asperger’s; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!

“I promised I would change and I did” – did Professor Tony Attwood’s autism conference pacify the #actuallyautistic community?

“I promised I would change and I did” – did Professor Tony Attwood’s autism conference pacify the #actuallyautistic community?

With the Association for Child And Adolescent Mental Health (ACAMH)’s logo looming large behind the stage in Sheffield, and serving as a reminder that today was about improving understanding of mental health issues, Professor Tony Atwood was faced with a challenge at the talk: ‘Tony Attwood – What you need to know about Autism’, on May fifteenth, 2019. (Photo of Professor Attwood by ACMAH).

Would Professor Attwood, a seasoned speaker, continue the rhetoric that has included the disparagement of autistic individuals, in order to get a laugh from delegates predominately consisting of clinicians and parents of autistic children?

Or, would he develop a 250 strong community of inclusion and understanding whose delegates went away enlightened? The answer is – both.

Let’s look at the positives of Professor Tony Attwood’s autism presentation, of which there were many.

A side on image of a white female used to illustrate autism article(1)Professor Attwood spoke of the increased awareness of the prominence of autistic girls and females. He detailed the ‘fake it till you make it’ practice of ‘camouflaging’ among young female autists, and indicated the risk of predatory male characters towards young female autists [the word ‘autists’ being the author of this blog’s preferred short-hand term for ‘autistic individuals’ – it isn’t a term that Professor Atwood used]. He explained that female autistics may lack a ‘social identity’.

(2)He spoke at length about autists’ ability to empathise (debunking out of date theories to the contrary). “They [autistics] just didn’t read the signals; it’s not that they don’t care.” [Yes, the ‘they’ language was prevalent!] Professor Attwood described ‘empathetic attunement’ in autists; a sixth sense of knowing what a third party feels, or their mood, which was a breath of fresh air, when many professional clinicians consider autists not to have empathy. (However, live on Professor Attwood’s website is the dated statement: ‘Someone with Asperger’s syndrome… has limited social understanding and empathy.’ Perhaps it is time to update the website?!)

(3)Professor Attwood changed his anecdotal content a little, when he took an anecdote he’s used before, when describing ‘the apple doesn’t fall far from the tree’ concept; specifically when parents of an autistic child are present for their child’s diagnosis with Tony, and the father is seemingly also autistic. Instead of ‘taking the mickey’ out of the father’s voice and imitating the man as if he were a robot, this time there was no robotic voice.

(4)He acknowledged that autistic individuals may have a fantastic sense of humour, and often excel in wordplay, and puns.

(5)Professor Attwood did stress that his goal “Is [autistic] self acceptance, not to cure [autism]”, in the context of psychotherapy; e.g. non-pathologising.

(6)He waxed lyrical about the benefits of music and art therapy as therapeutic treatments to explore trauma, after an event.

(7)Professor Atwood spoke positively about adapting Cognitive Behavioural Therapy (CBT) with components of yoga, mindfulness and music therapy, to help tackle depression.

Three girls are shown to illustrate that echolalia can be an early sign of autism.He also gave specific adaptions based on the autistic individual’s learning profile, and gave recommendations regarding how to adapt the therapy, e.g. using visual clues and experiential tasks (e.g learning through experience, and reflecting).

He later advised that therapists using CBT with autists should definitely have experience of autism, and detailed the concept of giving parents CBT skills.

(8)Professor Attwood showcased some useful emotion games for autistic children, to improve their social skills and help reduce their anxiety, if they feel they ‘don’t fit in’. (Although the narrative didn’t also stress the importance of teaching neurotypical or non-autistic individuals (NTs) to accept autists’ differences!)

(9)He neatly turned his disparagement humour on NTs, saying that, “You have to feel sorry for them; they’re fragile flowers that wilt and die , if not hugged regularly”, when discussing autistics’ propensity to avoid excessive hugging.

(10)Professor Attwood also suggested that lyrics, music playlists, poetry, writing and art are forms of eloquent expression, in terms of researching how to tackle depression in autists. A nice, forward-thinking attitude!

(11)He suggested some very useful therapeutic strategies such as using a favourite TV show or film scene to help an autist describe their feelings, emphasising the importance of recognising one’s own feelings, to help promote good mental health.

(12)Professor Attwood did acknowledge the benefits of using technology to communicate from a social point of view, saying, “They [e.g. autistic individuals] can disclose their inner self through typing, not talking.’

(13)He mentioned the brilliant concept of using a Fitbit watch to check an autist’s heart rate, which increases under anxiety or stress, e.g. as a self-monitoring device. (And a tool for parents to monitor WHEN there’s a heart rate peak, e.g. to use as valuable data to prove the eminence of a child’s anxiety, and the locality or environment when the levels peaked).

(14)Professor Attwood did promote mentoring and advice from ‘actually autistic’ individuals, saying, “The repository of autism is there, with the knowledge,” when describing how autists had helped and given tips in response to his online ‘Ask Dr Tony’ series.
Woman with eyes closed _ to illustrate article on communication between NTs and autisticsHe also said psychotherapy for autists should ideally be designed and delivered by autistic individuals, citing four autistic psychologists that he personally knew.

(15)He did detail the concept of the ‘autistic energy account’, although mentioning the spoons theory, which autists tend to use, would have been a nice way to engage with the autistic community.

(16)With the narrative among some people in the UK that home-schooling may be a bad thing, Tony praised the concept of home-schooling young autists (with options or conditions), explaining that home-schooling had ‘saved his sister in law’s life’, in her teens.

(17)He did acknowledge the importance of sensory input as a trigger for anxiety, e.g. “In your bedroom [as an autist], your difficulties dissolve; you can manage your sensory input.”

(18)Although it wasn’t presented due to over-running timewise, there were some really excellent slides at the end (supplied to delegates), which referenced the ‘Self-affirmation Pledge’, ‘I am not defective, I am different’), and detailed a plan for dealing with a ‘Depression Attack’, that included removal from triggering environments and situations.

However, whilst the autistic individuals in the audience relished all of the above content, there was an issue with some of the LANGUAGE used. Here are some of the more negative elements of the event:

(1)The ‘othering’ language was prevalent, with Professor Attwood literally using ‘us and them’ language. (Also using identity first language e.g. ‘person with autism’, which many autists tend not to use.) Incidentally, the ‘othering’ narrative was also picked up by the mother of an autistic teen who had joined her at the conference.
Two females talking _ to illustrate communication between NTs and autistics: ASC ASDThe Mum was mortified at the ‘them and us’ language, and obviously distressed by it.

(2)There were many examples of ‘presenting banter’ to get a laugh. Described by a fan of Tony’s presenting style as ‘sardonic’, they’re as follows:

*The anecdote of the male aspie who when asked whether a female looked fat in a dress, replied, “No, you look obese’. Cue audience laughter.

*When describing the aspie chid, who suggests to a neighbour that she wears a hat to cover up her big ears. (Sourced from a Judge Judy book on teaching social skills). Cue laughter.

*When describing an autistic child whose mother is upset, and who isn’t clear on what comfort to offer. To the audience: “If YOU don’t know what’s missing [in the scenario], YOU may need a diagnostic assessment”. Cue laughter.

*When recalling a man from Tony’s clinic, who began complimenting his wife once in possession of Tony’s ‘compliment guide’ [used to help clinicians teach social skills]; but stopped the wife’s compliments, once the guide was lost. Cue laughter.

*The tongue in cheek comment that ‘Cats are autistic dogs’ (cue laughter). While there’s a book called ‘All cats have Asperger Syndrome’ by Kathy Hoopman, whose books are reportedly loved by autistic children, this is the kind of joke that sounds wrong from a non-autistic person.

*Using the ‘we and them’ narrative to describe a child who had assaulted a teacher by poking her with a pencil. “WE (NTs) THINK it – we don’t DO it.” This language would undoubtedly leave the autistic delegates feeling ‘othered’.

(3)There were copious references to Professor’ autistic son Will, whose autism was missed in childhood:

“He goes on and on, and just doesn’t get to the point!”
(When describing his son’s prison sentence). “[At least] we got respite care when he was in prison, and knew where he was.” (Cue laughter). This narrative felt uncomfortable, to a degree.

(4)There were also a number of sweeping generalisations, e.g:

“People with autism interrupt all the time.”
“If you make a mistake, the first person to correct you has autism.”
(The irony of this constructively critical article ‘correcting’ Tony isn’t lost on us!)
A wince-inducing reference to autists being like Dr Jeckyl and Mr Hyde, when describing autistic masking.
The statement that “Autism occurs when you [e.g. the autist] walk out of the room”, meaning that when an autist retreats to their bedroom for solitude, their challenges are reduced. True, but a poor over-simplification, suggesting that socialisation is always the main issue, or stressor.

(5)The statement that parents of autistic adolescents should “Provide a plan or schedule [after the child has left school], as they may not leave their castle [e.g. their room is their safe place, or castle], or may fill their time with Minecraft, or solitude.”
Professor Attwood had already stated that young autists need solitude ‘to feel better’, so it was a shame to suggest that parents need to provide social plans to prevent the aloneness that the teenage autist would actually need, in order to recalibrate. A good point explored further by Tony in the Q&As, but over-simplified in the above sentence.

(6)The (presumably) tongue in cheek generalisation that adolescent female autists may choose either: “Promiscuity, as at least I will be popular – or drugs, as at least I will be happy”, when describing teenage autistic girls as “Either puritanical, or using their sexuality to be popular.” There was for example a teenage autistic delegate in the room, who understandably may have felt downbeat about this impending life forecast.

(7)Using the wrong pro-nouns to describe a transgender woman.

(8)Alluding to the frustrating ‘We are all a little bit autistic’ narrative, when stating: “Autistic characterisations are like a jigsaw of 100 pieces [e.g. 100 autistic traits] – I have never met a person with less than 20 pieces, and never met someone with autism with 100.” (Although carefully noted, this may not be absolutely verbatim; so alluding to neurotypicals as people, rather than autists as people too, was hopefully not the intention here; although another delegate did also pick up on the specific language used here.)

(9)Professor Attwood didn’t specifically mention autistic stimming at all, and made a comment along the lines of, “I don’t like the American stim comment; you [eg. as an autistic individual] do it as its soothing”, seemingly disliking the phrase itself, but not acknowledging stimming’s links to environment, sensory regulation etc. (See below).

Autistic stimming, or ‘self stimulating’ behaviour – calming, satisfying and recalibrating

(10)A brief mention of the ‘Who falls in love with an aspie?’ narrative, and the observance that many wives of autistics are nurses. (This is apparently true in Tony’s clinical experience, but lends kudos to the autist thinking that they will only be loved by someone who wants to repair or nurse them.)

So there we have it – more positive than negatives – a success, surely?

With a general feeling among the #actuallyautistic advocates present that Professor Attwood had toned down the disparagement humour (compared to previous events), the day finished on a good note, when Sarah Jane Harvey of Agony Autie proposed to Tony that he join her, on one of her Vlogs.

Explaining that she didn’t always like his rhetoric towards autistics, Professor Attwood wholeheartedly agreed to the proposal, saying that if autistic individuals wanted to correct him he’d welcome their input. When writer Kate Fox commented on his reduced use of disparagement humour on the day, Professor Attwood explained that “I promised I would, and I did”. We’re not sure to whom he promised, but it is definitely a step in the right direction!

Respectful language

In balance, there was a lot of useful information at the conference presented for parents and clinicians, and plenty of encouraging concepts concerning managing stress and anxiety. The criticisms from #actuallyautistic individuals mainly concern language. (After all, other minorities such as ethnic groups now have more respectful language. This website details the concept of respectful language very well, advising: ‘Be sure to avoid language that stereotypes or patronises’.)

The simple change from the word ‘they’ to either ‘autistics’ or ‘autistic individuals’ would go a long way to aid inclusion, and avoid ‘othering’.

The host organisation (ACAMH) was quick to respond to questions fielded ahead of the event (which was very professionally run), and perhaps were the advocates of Tony using less disparagement humour?! The venue had quiet rooms, roomy seats, plenty of breaks and the sound system was very good – the Q&As were well managed by the hosts, and the live-streaming audience were catered to well. So, on balance? A generally good experience, with a simple request to use more respectful language moving forward, as #autisticsdeservebetter.

NB – edited update – a reader has questioned whether an objection to the word ‘they’ is because it’s a gender neutral pronoun for autistic people, as opposed to ‘he’ or ‘she’. Just to be clear, that isn’t the issue at all, the reference to ‘they’ and ‘them’ is not gender-related, but related to autistic and non-autistic (neurotypical). So, to clarify, ‘they’ meaning autistic, and ‘we’ or ‘us’ meaning NT. 

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Disorders / Conditions; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!

Autistic stimming, or ‘self stimulating’ behaviour – calming, satisfying and recalibrating

Autistic stimming, or ‘self stimulating’ behaviour – calming, satisfying and recalibrating

We have been asked a few times about ‘stims’, and while we have mentioned them within other articles (see directly below, in an article on autistic meltdown), we thought it would be useful to delve deeper in a single blog post.

Autistic meltdown, or neural high jacking – what is meltdown, how can outsiders deal with it empathetically, and how do autists manage their own meltdowns? (ASD/ASC)

Understanding stims

black and white graphic to illustrate black and white thinking styles for autism blogUnderstanding stims is key to understanding how autists process emotions and sensory input. Stims, and the action of stimming, refers to ‘self stimulating’ behaviours; they’re not limited to autists (many of us twirl our hair, or tap our fingers to an imaginary beat, for example); but most autists stim.

Stims may be used for various reasons; for example in times of anxiety; in periods of happiness or contentment; when the body is in need of regulation; and simply because the individual feels good.

Most people, if they have heard of autism stims, think of hand flapping, which is the stereotypical one used most commonly in the media. But perhaps rightly so, as a repetitive hand movement is a very common stim, in times of dis-regulation, sensory overload or anxiety.

Most autistic individuals stim to some degree; they can be very subtle however, and autists who are late-diagnosed may not even realise that their habitual behaviours are stims. For example, clasping or rubbing one’s hands together, or wrapping hair around a finger.

Here are some examples of physical autistic stimming-

Clapping or flapping the hands, or moving them rhythmically.

Finger clicking or snapping, e.g. with the thumb and third finger.

Beating out a rhythm with the hands or fingers (and feet), to a beat in your head.

Flicking or stroking fingernails.

Playing with jewellery, especially if it has movement, e.g. a ring with a spinning section.

Touching something smoothly tactile, like a watch, a clothing label, or piece of jewellery.

Proprioceptive stims e.g. rocking or moving the body – and as well as a ‘big’ movement, this can be the tiniest movement, for example isolating and clenching a small muscle.

Moving the joints somehow, to achieve a ‘click’ or mobilisation – e.g. moving the joint to the edge of its socket.

Vocal stims

Woman listens to music to illustrate autism blogExamples of vocal stims can be humming; singing without recognisable words; and making mouth noises (for example sucking on the teeth or cheeks, or clicking the tongue).

Cognitive autism stims

There are also cognitive autistic stims that autists carry out, that seemingly provide some kind of sense of control, comfort or regularity. These could be a particular numerical sum, or counting in a particular formation. (Many autists use echolalia, and sometimes a favoured phrase or number sequence that sounds appealing may be used as a stim.)

Other stims

There are also other stims, such as: visual stims, e.g. staring at lights or an interesting kinetic picture (like the one at the top of this page), or watching a spinning object; auditory stims, e.g. listening to the same song on a loop; olfactory and oral stims such as sniffing objects or licking and chewing on things; facial tics and features of Tourette syndrome; dermatillomania or picking at the skin (e.g. scabs or hairs), trichotillomania (hair plucking) and also pressure stims – perhaps sitting in a certain way to achieve a sense of pressure.

Self injurious autistic stims

Some individuals may direct a repetitive action on themselves, e.g. hitting their head or face. Stims like this can be detrimental; e.g. in the case of hitting oneself, they are not desirable or helpful in the long term, and can lead to self-harm. In such cases the need to stim may be directed to another object, such as a squeezy toy or boxing punchbag. Using pressure or movement may also be a useful alternative, e.g. pressing the hands against a wall or pressing up from the floor, or bouncing on a Swiss ball. Weighted pressure blankets may also be useful, e.g. to sit or lie under. These ‘tools’ may work to help redress sensory dis-regulation.

Letting off steam

Image to illustrate autism articleAlthough some proponents of behavioural training seemingly seek to reduce stims, and frame them as some kind of antisocial behaviour, in fact there is nothing wrong with autistic stims. Remember that autistic individuals may have problems not only with processing feelings, but also sharing their emotions in the expected way. Stims are very often a way of putting an emotion into a physical representation.

So, the above everyday examples of behavioural stims are perfectly normal and acceptable, especially in children who are finding a place in the world; stims should not be discouraged.

They are simply a way of recalibrating, finding a sense of calm, and satisfying an inbuilt need for repetition. “Autistics are easily overloaded, and simply need to release tension more frequently. When I stim, I often feel like an old fashioned boiler letting off pressure; sometimes in tiny bursts, sometimes in huge belches of steam,” writes Kirsten Lindsmith.

Stims can be valuable communicative information, if an autist finds (in that moment) talking difficult. A stim can indicate rising anxiety, for example. This is valuable information for family members accompanying a young autistic child somewhere, and a potential sign that the environment could be stressful.

In the workplace

Woman- to illustrate that Autistic burnout - Burnout is a physiological symptom of system overloadIn situations such as the workplace where autistic stims are not necessarily encouraged or accepted, there are ways to make them less noticeable; e.g. there are many fidget toys or gadgets like pens, chewy stim toys and pieces of tactile jewellery that can divert attention.

Many autistic women for example enjoy having smooth, manicured nails that fulfil a nice sensory need, and touching the nails can be very discreet.

(NB, follower JFC has pointed out that our question: ‘It would be interesting to find out to what extent smoking and vaping is used by autists, to satisfy the need to stim; especially in the workplace’, could be misleading, in that smoking indoors is banned. It was more pondering the concept of the Smoking Break, a social gathering that takes place outside, and whether some autists may smoke or vape to satisfy a stimming need, while also navigating the social landscape. We’d welcome any feedback from smokers/vapers on this matter!)

What else causes autistic stimming?

Sensory challenges are often cited as big causative factors for stims, as the stimming can create a tactile input (e.g. flicking a muslin or blanket, or a clothes label). The action can help self-soothe and calm the individual, if the stim is linked to anxiety or over / under stimulation from noise, lights, socialisation etc.

It’s proposed that stimming can actually cause the release of beta-endorphins in the body, which then causes a feeling of ‘numbness’ from sensory overload, or plain old pleasure.

The main hypotheses and known causes for stimming are: blocking out excess sensory input (in overstimulation); managing emotions; providing extra sensory input (in understimulation); reducing pain; and self-regulating.

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Disorders / Conditions; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!