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The autism chasm – medicalised words versus neurodiversity concepts; and dated paediatric processes. When will we reach a level of understanding?

The autism chasm – medicalised words versus neurodiversity concepts; and dated paediatric processes. When will we reach a level of understanding?

It’s no surprise there’s some confusion and frustration between the neurodiversity proponents and the parents of autistic children going through assessment.

As an autistic adult who supports the neurodiversity concept, and a parent of a neurodivergent child, this author regularly witnesses a gaping chasm.

black and white graphic to illustrate black and white thinking styles for autism blogThe neurodiversity supporters, who are often autistic adults, or parents whose kids ALREADY HAVE a diagnosis of autism, are sometimes further along their journey of education and awareness than many parents of children undergoing assessment. That’s because the language of the clinicians and ‘experts’ in the parents’ lives (e.g. school SENCOS, teachers, Local Authority spokespersons, paediatricians, etc) is DIFFERENT and DATED.

Monotropism and autistic inertia

Neurodiversity proponents use concepts and language like ‘monotropism’ (atypical patterns of attention that describe issues that doctors would call hyper-focused interests, or obsessions – source: www.tiny.cc/DMurray); ‘autistic inertia’ (to describe issues that doctors would state as including executive function); and words like ‘traits, aspects, facets’ etc, to describe common autistic features; meanwhile, Drs, use medicalised words like ‘symptoms’. Most famously, neurodiversity proponents describe a ‘neurology’, or at worst a condition, while Drs use the word ‘disorder’.

Autism pity memes or ‘warrior mom’ memes

Head on over to social media, and neurodiversity groups discuss issues like monotropism and autistic advocatism. Meanwhile, on the parents’ support groups, families and carers may post about how their son’s ‘strange noises’ are irritating; why their family dinner was a disaster because the child was ‘unbearable’ (read: overwhelmed); or a ‘pity meme’ or ‘warrior mom’ meme about bringing up an autistic child. (The two groups aren’t mutually exclusive – there are many, many parents learning about neurodiversity on these groups and pages, and many, many helpful individuals who support the neurdiversity paradigm helping out the parents on their support group pages, e.g. with info about supporting the kids in question.)

The thing is, we as parents can’t get away from the medicalised language. It’s how our kids (and ourselves) are diagnosed with autism. It is clear why parents at the start of their journey follow the terminology that their (often outdated) doctors use. It’s not only all around them, it is a REQUIREMENT to understand it, and use it when conversing with the so-called experts surrounding a child. No matter how many neurodiversity articles you read and absorb, the dated phrasing is around you at every turn, if you’re within the NHS assessment system, or British social and local authority pathway (UK-centric).

Woman- to illustrate that Autistic burnout - Burnout is a physiological symptom of system overloadAutism asssessment

In the course of just two days, I recently had a couple of enlightening experiences (again, this is UK based). A paediatrician told me he could only recommend onward neurodevelopmental assessment for a child if indicative signs were pervasive across all periods, and were witnessed by him at the child’s FIRST paediatric meeting. Have these doctors not heard of autistic MASKING? Literally 10 minutes (which is the time the Dr spent with the child directly, as opposed to with the parents) in a room, and a Dr can decide ‘no signs of autism are apparent’ in a child, and discharge the child, when the parents have waited many, many months to be seen? It is non-sensical.

(Families, remember – these stickler NHS paediatricians usually need to see two examples of ‘autistic behaviours or traits’ to recommend onward neurodevelopmental assessment. If the school aren’t witnessing anything (which could mean the teachers in question aren’t experienced in the field, or don’t realise that what they’re seeing represents autistic processes and traits), and the paediatrician doesn’t see anything at the first meeting, you WILL likely need further evidence. This could include private diagnosis, or presumably could even include supportive letters and evidence from other adults that are responsible for the child, e.g. group leaders or tutors. It is NOT FAIR that a paediatrician can choose not to refer a child on for assessment just because insufficient signs of ‘pervasiveness’ were apparent in the tiny window you were granted on that day.)

(Read more about children’s autism diagnosis HERE).

Haven’t they heard of AUTISTIC MASKING?!

There’s clearly a massive skills gap with some paediatricians who are generalists (e.g. don’t specialise in neurodevelopmental conditions), or have more experience of individuals that ARE autistic, but also have support needs, e.g. who present differently, with less masking. They NEED to know about autistic masking, and that not all autists display all their traits at once – and they need to stop relying on questions like ‘Does he/she hold eye contact?’ and ‘Does he/she line toys up?’, as if these are the key factors that would allow forward assessment for an autistic child.

The second experience I had in the space of those two days was that a local authority representative mentioned the ‘levels’ of autism, e.g. 1, 2 and 3. (This describes, at level 1, someone with so-called mild symptoms, who doesn’t need much support. Those with level 2 or 3 autism are said to have so-called moderate to severe symptoms, and require more substantial support.)

Autistic functioning labels

Using these descriptions (and the word ‘symptom’) is fine medically/diagnostically, as it relates to the (American) DSM-5’s description, which advises diagnosing clinicians to use the broad term Autism Spectrum Disorder (ASD), for diagnosis, with numbered sub-categories as described. BUT, no autistic adult uses these sub-categories. Neurodiversity advocates campaign for ALL such functioning labels (e.g. also including ‘mild autism’ and ‘severe autism’) to be disbanded.

Read more here – https://spectra.blog/news-views/autism-labels-and-language/

So, the parent trying to find their way along a journey where (they hope) that an autism diagnosis will allow their child support, are barraged with medicalised jargon and dated views on autism. Yet, as they try to self-educate about modern concepts of neurodiversity and neurodivergence, they are faced with yet more language that is confusing, and is the opposite of what their so-called experts use. (Remember, the experts are bound by law and the jurisdictions of their diagnostic manuals.)

The neurodiversity proponents have it right

What’s the answer? In this author’s opinion, the neurodiversity proponents have it right. Their concepts about supporting difference (not disorder), and of celebrating the benefits of neurodivergence along with recognising the challenges it may bring, are no-brainers. Of course it makes sense. But the educators and ‘experts’ are still on their own journey. They’re surrounded by medicalised textbooks and training courses. Some had next to no training on autism in the first place, and may not have had much exposure to autistic individuals who have little in the way of support needs. So education is KEY. But alongside this, it’s important to educate ourselves about the WHOLE PICTURE – the diagnostic guidelines, the medicalised jargon we can’t bear, the dated paediatricians who have no obvious understanding of what it’s like to experience the world as an autistic person.

I wrote the book ‘Autism from A to Z’ to address some of the issues touched on here. I wanted a tome that helped experts and professionals (as well as families and carers, and autists themselves) to understand some of the finer points of modern-autism thinking, from an #actuallyautistic perspective. But equally, I needed to outline the diagnostic facts, for individuals at the start of their journey. It launched at a UK-based SEN event (The Autism Apprentice’s Special Educational Needs (SEN) Information Day at The Appleyard, Sittingbourne, Kent on 20th March 2020). #autism #autismawareness #SEN #Kent

BUY AUTISM FROM A TO Z HERE.

Here are a few reviews:

‘Autism from A to Z is full of information that people new to the autistic world would find extremely helpful when either discovering themselves, or supporting a loved one or client.”

EM, Kent Autistic Trust

The book Autism from A to Z by Kathy Carter“Autism A-Z is easy to digest – I love how its compartmentalised in alphabetical order to find areas easily. The content is the most up to date inclusive of diagnostic changes. Autists are amazing and unique and this book consolidates information and experience supporting this view point. Autists, Parents and Professionals will benefit from having a copy.”

TH, Independent Cornwall Autism Network

‘I recommend this book for anyone new to autism. Autism from A to Z  is refreshingly free of ‘politics’; it simply states the facts and points the way towards further study. It is a very positive book, which promotes self-care and mutual respect for differing views. It’s a very good starting point for further study, and is written by someone with personal experience; I found myself hooked.’

LA, autistic adult

A little disclaimer – here at Spectra.blog we don’t claim to be experts about autism; the information we post here is based purely on our own exposure and experiences. 

Exploring what being ‘authentically autistic’ means

Exploring what being ‘authentically autistic’ means

Woman with eyes closed _ to illustrate article on communication between NTs and autisticsI read the recent psychology article on being ‘authentically autistic’ with interest. The current climate seems the most accepting to date, in which to be authentic in this way. The current ‘#bekind’ movement, the increasing acceptance of minority groups, and the increasing awareness of autism as a neurodivergency, certainly means this is the most accepting era that autistics have experienced, to date. But of course, that doesn’t mean it’s perfect. There is a LONG way to go, in terms of autism education and awareness, although great steps have been taken. (For example, with the recent news about the UK’s NHS mandatorily training of their staff in autism and learning disability. (Isn’t it surprising that this wasn’t in place previously!)

However, alongside this positivity, there is a flip side – for example – there are a great many individuals supporting behavioural therapy to suppress their families’ autistic traits; plenty of people who (inaccurately) describe their autistic children as ‘vaccine damaged’; and a large, ambivalent group whose paths do not cross with autism, who are unsurprisingly uneducated about the neurology.

Examining this author’s ‘authenticity’, I was diagnosed in my 40s, and as an autistic adult, my friends and family know about my diagnosis. In my professional capacity, of course I present as an actually autistic person; but it’s not something I shout about on a day-to-day basis, and yes, there are many people on the peripheries of my social experiences – e.g women I nod and smile to at the school gates, friends of friends – who do not know I am autistic. (Read about the author HERE).

Am I being unauthentic by not sharing it widely? I do not think so. I see some autistic individuals who must have quite extrovert personalities, and seemingly ‘put it out there’ at the first opportunity, e.g. chatting to random people in a queue, or letting staff members at an event or facility know they’re autistic. It’s admirable, and it helps raise awareness of autism, particularly the fact that autism is everywhere; we’re your friends, teachers, friends’ spouses, colleagues, etc.

woman in black and white - to illustrate autism article re black and white thinking stylesHowever, that level of sharing does not come naturally to me; I’m not the sort of person to disclose personal info on a whim, unless it is relevant. And frankly, with the large group of people in the world I mentioned who are still uneducated, I don’t want to have a quick, superficial conversation with them about my own autism when I am buying coffee, or travelling on public transport. I don’t want to wear a funny T shirt with an autism slogan. I don’t see that it promotes acceptance – awareness maybe, but of what? Awareness without understanding isn’t necessarily useful. I’d welcome an actual conversation and will gladly help to educate them if they’re open to this; but a quick, transitional encounter isn’t for me.

With the people in my outer periphery of associates, of course I would discuss my autistic needs at the appropriate time, but I don’t put it out there for no reason; does this make me less authentic? Some people would say so. Likewise, I don’t advertise lots of other personal details to other people, for example my age, my religious tendencies or gender identity. I feel this situation or choice regarding sharing and over-sharing is more to do with extrovert versus introvert, then authentic autistic versus non-authentic autistic.

Here’s how I believe I am being authentic. To this author, being authentic means that the people who need to know, know about my autism. I’ve for example started an adult education course, and of course I am open there about my autisticness, which is very liberating. Although I work for myself, if I were to apply for a job within the workforce, I would definitely disclose it to bosses and colleagues. I definitely prioritise autistic self-care, and if that means not going to a social engagement, leaving a family event early, or explaining to family or friends that I am feeling overwhelmed, facing shutdown or am ‘peopled out’, so be it. As a late diagnosed autistic, I masked for years (unintentionally), it’s what we do to fit in. But now I am conscious of not masking, as much as I can, as it’s too depleting.

Picture of an angry woman. Asking: Are autistic mums enrared at Tony Attwood’s disparagement humour? Is it Good-natured fun, or bullying, exploitative and offensive?One of the problems with being #authenticallyautistic is that this means showing our true feelings and emotional states, as they relate to autism; and if we are late diagnosed, this is not something we are likely to have done previously. The fact we are late diagnosed probably means we have been camouflaging or masking for years, and these behaviours are entrenched. One of my biggest challenges regarding not masking is for example simply keeping up the expected levels of social courteousness when I am overwhelmed or tired. It’s usually strangers; for example the clerk on the end of the phone at your bank; the fellow dog walker; the shop assistant; the bus driver; all of the people we engage with regularly, and sometimes engage in pleasantries and small talk with. Being authentically autistic would sometimes mean I would be seen as being incredibly rude; e.g. not smiling, not looking at their faces, and refusing to talk, if that’s what my emotional state made me want to do. That’s not kind, so I ‘mask’ with them, not to make myself fit in, but so as not to upset others. So in this example, I am not being authentically autistic and showing my true feelings and emotional state, as this may upset others, and spoil their day.

To summarise, I think we should all be as authentic as possible, whatever our neurologies. Some days, that may be more authentic than others! We can only ever do our best.

The book Autism from A to Z by Kathy CarterA little disclaimer – here at Spectra.blog we don’t claim to be experts about autism.
The information we post here is based purely on our own exposure and experiences. 

Respecting neurology – helping autistic individuals, especially children, enjoy festive or celebratory periods like birthday and Christmas events

Image of festive lights to illustrate article about avoiding sensory overload for autistics.Christmas wasn’t so long ago at the time of writing, and post-holidays, social media sadly included posts from some individuals bemoaning the fact that their autistic child somehow spoiled the festive period because of their ‘overloads or meltdowns’, or general erratic behaviour. (Remember, autistic meltdowns are a form of ‘neural high jacking’; a debilitated state of incoherence. They are not behaviours).

(Incidentally, it is our intention, following on from our book ‘Autism from A to Z’, to publish a further book presented by Spectra.blog, specifically about managing holiday festivities with autistic family members.)

But in the meantime, here are a few pointers that can be applied to any family or social gathering, in terms of helping autistic individuals enjoy festive or celebratory periods:

Put social conventions out of the window

Any expectation of a certain way to behave won’t work for an autist, for a set day of the year. This could include sitting at a table ‘nicely’ for three food courses; playing games that involve being stared at (or laughed with/at); or conversing with people excessively, especially if they’re not common house visitors. Think outside the box, and celebrate in a way that the autist enjoys, not that third parties expect.

Avoid physical requests for hugs and kisses

The age old concept of a ‘hug in return for gift’ is abhorrent, and not kind, if it isn’t consensual. May autists find physical contact uncomfortable, especially from people that they don’t see regularly. Likewise a kiss can be an invasion of privacy. It is best to let the child choose their level of interaction – a handshake at arm’s length can be a good compromise.

Avoid changing the room layout

child holds balloons to illustrate autism spectrum disorder blog postSome autists dislike change in their environment, and things like Xmas trees or new chairs and sofas can take some getting used to. Ask the autist what they can tolerate, or would like; give them a safe haven of familiarity, even if some areas need to be changed. Could a small Xmas tree go on a windowsill instead, for example?

Consider the sensory input

Avoid excessive sensory input, unless the individual especially enjoys it – examples would be flashy tree lights, party music, high levels of social chit-chat, Xmas crackers, popping balloons, etc. Combined, these aspects can be a fast-track to meltdown and anxiety. Ear defenders, music headphones and quiet spaces for the autist would be good compromises. (Remember that most autists experience over or under-sensitivity to sounds, touch, light, temperatures etc; this can affect them greatly. The National Autistic Society (NAS) states – “Many [autistic] people have difficulty processing everyday sensory information. Any of the senses may be over or under-sensitive, or both, at different times. These sensory differences can affect behaviour, and can have a profound effect on a person’s life.”

A word on autistic children and birthday parties 

Birthday parties can be paradoxical for autistic children. Because of the fact they’re autistic, they may find it hard to socialise at parties, or may not even get invitations to many peer events. You can’t force someone to enjoy a social event (and it is hard to plan ahead and know how one may feel on a set day – even if you want to go to an event, if you’re overwhelmed from an autistic sensory perspective that day, or are feeling anxious, you won’t enjoy it.) So, it is best to ask the autistic child what they want to do. Maybe they could go a little early to meet the birthday child while it is quiet, and then decide whether to stay? Maybe they will go if a parents attends too? Perhaps they’d rather see the child another time for a quieter birthday celebration? If it’s their own ‘party’, follow the child’s lead on what they’d like to do – few autistic children would enjoy a raucous, busy party (and if they do, they may need copious ‘down time’ to recover thereafter). It could be for example that having a couple of close friends over, or a day at a favourite attraction, is preferred? Look out for SEN-supportive events at local attractions, as these are often quieter with less uncomfortable sensory output.

The book Autism from A to Z by Kathy Carter
A little disclaimer – here at Spectra.blog we don’t claim to be experts about autism.
The information we post here is based purely on our own exposure and experiences. 

A Thousand Souls – a poem about autism

A Thousand Souls – a poem about autism

A thousand souls – a poem about autism by Kathy Carter of spectra.blog

 

In a lifetime we’re privileged to meet eighty thousand souls.

Around a thousand have autism; still with dreams and goals.

On the autistic spectrum, processing is a chore.

Not necessarily ‘impaired’; nor diseased to their core.

Educators, practitioners, families and friends

Lacking understanding, yet on them the autist depends.

 

How many of this thousand that we’ll meet, have diagnosis?

Many are still unaware; yet we share symbiosis.

Without autism, computers, smart phones, tech are less enduring;

Pioneers forging ‘aspie’ paths: Tesler, Gates and Turing.

So, what’s the difference in these souls, the thousand that we’ll meet?

Maybe sensory challenges, to light and sound and heat.

 

A difficulty blending in; socialisation quirks.

Different communication styles; a trait that sometimes irks.

But at their core, a simple truth –  differences in processing.

A brain speed sometimes fast or slow – constantly assessing.

These souls, often creative: scientists, artists, writers.

Musicians, sculptors, poets, whose creations still delight us.

 

Many leading figures; Michelangelo, Warhol, Mozart

Are thought to have been autistic – perhaps it drove their art.

Yet those with autism don’t want reverence; handling with kid glove.

Just inclusion, acceptance, and a healthy dose of love.

Much less ignorance: ‘Well. We’re all autistic aren’t we?’

No. And while we’re at it, that young autist isn’t naughty.

 

Another irk. ‘You must be high functioning’, peers say.

It’s called ‘autistic masking’, to get one through the day.

So, these one thousand souls, that we’ll meet throughout our life.

They’re our bosses, neighbours, workmates; a husband and a wife.

The literal thinkers, loyal peers, problem solvers great.

The listeners, grounded cynics, the friends we truly rate.

 

Their daily struggles are unseen. Until the curtains close.

Their difference in processing results in crashing lows.

So education, acceptance and awareness are our goals

To understand autism, and embrace these thousand souls.

The book Autism from A to Z by Kathy CarterOur book ‘Autism from A to Z’ is now widely available – purchase here.

Autism rights and legislation (UK)

Autism rights and legislation (UK)

This article is extracted from the author’s book ‘Autism from A-Z’, and looks at the legislation concerning autism – for anyone hoping to access support for themselves or their families, it is important to familiarise oneself with it. Please note that the National Autistic Society (NAS) has extensive information at the website: www.autism.org.uk under the heading ‘Accessing Adult Social Care – England’, detailing how autists can access a needs assessment by social services, and what support is available.

There is legislative framework in place to protect autistic people – in the UK, this legislation includes:

Children playing - for autism article on spectra.blog*The Children Act 2004 – its main principles revolve around promoting safety and child protection. The Act covers local authorities and professionals that work with minors, and also covers the roles of parents and guardians and the UK courts, in terms of how to protect minors. This would include safeguarding and protecting local children, assessing their needs and promoting their upbringing by families (if safe to do so). The Act also details supervision orders, emergency protection, provision of accommodation to suitably vulnerable or abandoned minors, as well as so-called disabled children, or those with so-called special needs.

*The Children and Young person’s Act 2008 – this extends the existing framework in England & Wales in terms of appropriate care for minors, and includes overseeing care placements and educational settings for ‘in care’ minors.

*The Education Act 2002 – this ensures that school governing bodies, local education authorities and educators have consistent arrangements to safeguard children.

*The Children and Families Act 2014 – this aims to ensure increased protection for vulnerable minors, including ‘in care’ children, and those with ‘additional needs’. It places obligations on local authorities to produce legally binding Educational & Health Care Plans (EHCPs) for minors with such needs. EHCPs aim to make sure needs are met continually, and teachers and parents may request this. Local authorities (with health and social care commissioners) will have their own Autism Health Care Pathways, which generally include these elements (possibly with differing terminology): Local Offer (where a lead professional is selected), Team Around the Family (where an assessment need is considered, e.g. an autism assessment), Referral, and then Integrated Assessment, My Plan (including the setting’s allowance of budgets), followed by My Life and My Review, e.g. goals and reviews for the individual. The aim of the process is to establish support needs, and then plan for outcomes, via a multi-agency system.

Grandparent with an autistic child (stock shot)*Guidance also extends to single assessment processes, carried out by local authorities regarding welfare concerns – an assessment aims to determine if child needs any protection, and is carried out together with the Working Together to Safeguard Children 2015 guidance. These processes are multi-disciplinary, and involve all services involved with the family.

Local (LA) autism assessment

In the UK, the National Institute for Health and Care Excellence (NICE) has guidelines for autism assessment that local authorities and health and social care commissioners should follow, in order to meet best practice, and present their own Autism Health Care Pathway (see: www.tiny.cc/NICEpathway). For children requiring autism assessment, Local Authorities tend to refer individuals to the Community Paediatrics team, local specialist services (depending on the need), or the Child and Adolescent Mental Health Service, or CAMHS (although this service does have ‘referral thresholds’ that may include ‘associated mental health difficulties’. The NAS has previously criticised CAMHS (source: www.tiny.cc/NAS_CAMHS), stating in 2010: ‘Forty four per cent of parents find it difficult to get a first referral to CAMHS for their child, with a quarter waiting over four months for a first appointment, following referral. [CAMHS] professionals told us that many of their colleagues had not had basic autism training, meaning that they could not treat mental health problems in a child with autism).

UK statutory services available for autistic individuals

In the UK, there are some national statutory services available to autistic individuals and their families. For example, the Government has a duty to provide national statutory services at local level, e.g. schooling, housing, healthcare services, healthcare professionals (such as speech and language therapists), as well as child and adult services in the community, e.g. CAMHS. The Care Act 2014 and the Families Act 2014 cover assessment, care and support for those in need of it, and this legislation helps with a framework for local service providers to adhere to.

Image illustrating article showing the grandparent of autistic child ASD ASC.So, the above content is a brief over-view of UK legislation and statutory services. The big questions include: how easy is it to gain an autism assessment, especially for children; how is it fair that local services and waiting times differ so much across different geographical locations; is there sufficient and easy access to social care locally; and why is there (anecdotally) a seeming lack of training, understanding and awareness concerning many educators (in terms of identifying and supporting autistic pupils), and also mental health professionals? The NAS has reported that Government funding has been cut from services for disabled children and their families in England, and in 2019, joined forces with the Disabled Children’s Partnership (DCP), to call on the UK Government to reinstate funding, via the DCP’s ‘Give it Back’ campaign (see: www.autism.org.uk).

The NAS also has extensive information at the same website under the heading ‘Accessing Adult Social Care – England’, detailing how autists can access a needs assessment by social services, and what support is available. They also detail how autistic people can access social care, services from the NHS and universal credit, as well as information on SEND school funding.

The book Autism from A to Z by Kathy CarterDisclaimer – Please note, we don’t proclaim to be experts on autism, and the information posted here is based on the author’s own experiences and exposures to autism.

Our book ‘Autism from A to Z’ is now widely available – purchase here.