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.
Spectra.Blog author Kathy Carter’s new book, entitled ‘Autism from A-Z’, will shortly be published via Sirenia Books. Advance Review Copies will be available to professionals who may like to receive a complimentary copy for review.
Please contact us at firstname.lastname@example.org to express an interest. We invite contact from educators, counsellors, care staff, those working at local authorities, therapists (e.g. occupational / speech etc), CAMHS teams, representatives of autism and disability charities, as well as autism advocates with an established social media following.
Thereafter the title will be available for general sale via online retailers, and as special order at bricks and mortar book-sellers.
Thanks for your support while the author has slowed down content on Spectra.Blog while the book is being finalised!
This article is extracted from the author’s forthcoming 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:
*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.
*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.
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.
Disclaimer – 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.
The recent UK newspaper article ‘What is autism? How the term became too broad to have meaning any more’, by Tom Clements, has drawn criticisms from some quarters. Namely that (since the amalgamation of autism diagnoses into the phrase ‘autism’), he seemingly leans towards Aspie supremacy, e.g. wanting to distance himself from the word autism; and also that he uses dated and dehumanising language for those that have a lower IQ than himself. Here, this author considers some of the points within his article that have drawn such criticism.
Autism is a natural difference in processing
The original study that promoted the Guardian article is very broad, extensive, international and convincing, and lead researcher Professor Laurent Mottron was not necessarily being dismissive of autism when he found, as Mr Clements reported, that: “The objective difference between people with autism and the general population will disappear in less than 10 years. The definition of autism may get too vague to be meaningful.” Professor Mottron proposed that the diagnostic practices for autism have broadened, leading to a false increase in prevalence, adding that autism is a distinct condition, and also a ‘juxtaposition of natural categories’. This surely goes hand in hand with what neurodiversity advocates (whom Tom Clements is dismissive of) believe, e.g. that autism is a natural difference in processing (not an intrinsic disability, illness or disorder). Mr Clements draws from Professor Mottron’s quotes that autism could become ‘medically meaningless’, however this doesn’t seem to be what Professor Mottron implied.
Intelligence surely does not equate to spoken language?
Mr Clements cites ‘less verbally able autistic people being marginalised from the discussion’ (due to the neurodioversity paradigm), however, surely ‘less verbally able autistic people’ simply need to be given a chance to voice their opinions, which is what should have happened within Mr Clements’ own article, to make the feature more broad, and less opinionated. It is clear from the very many non-verbal autistic writers, bloggers and vloggers (e.g. Carly Fleischmann, Ido Kedar and Naoki Higashida,) who are sharing their stories online and in books, that just because one can’t speak, it doesn’t mean one is not articulate and intelligent. Intelligence does not equate to spoken language. The Guardian should surely have balanced Mr Clements’ views, here.
Mr Clements uses dated and ableist phrasing and rhetoric like ‘severe’ and ‘mild’ autism, as well as person-first language (person with autism), which is becoming more unfashionable, and even offensive to some people. Although, on his own website (see below) he does more frequently use identity-first language, e.g. ‘autistic people’, so perhaps the Guardian had a hand in changing his phrasing.
(Interestingly, Robert Chapman, writing on Psychology for Today, recently proposed ‘making better make sense of autistic disablement’ by drawing on the notion of intersectionality, developed by feminist theorist, Kimberlé Crenshaw. Mr. Chapman suggests using phrasing drawn from intersectional feminism, and applying it within the framing of cognitive disability, e.g., to quote Mr. Chapman: ‘When someone is, say, autistic and learning disabled, then they [could be considered to be] part of a third intersectional category (i.e. that of ‘learning disabled autistics’)… This framing allows us to acknowledge the complexity of autism without dehumanising different disabilities under the term ‘severe’, and [avoids] autistic people ‘talking over’ those autistic people with intersecting disabilities. For on this model, the only people who should be taken as the voice of any given intersectional identity are those that fall within their intersection.’)
What makes someone disabled or disordered?
Moving back to Mr. Clements’ article, the main opportunity that the Guardian missed by publishing the feature is the aspect of WHAT makes someone disabled or disordered. There is a significant school of thought that places autism as predominantly a difference in processing, and believes that it is co-existing conditions that make one cognitively disabled, and in Mr Clements’ words: ‘prone to lashing out and soiling themselves’. It would have been pertinent to bring in a co-author or add a panel with an expert’s opinion to discuss the types of condition that would affect ‘an autistic person with an IQ of lower than 30’, and lead to ‘cracked skulls and savage bites’ (again in Mr Clements’ dismissive words); maybe cognitive and intellectual disabilities, and conditions such as Fragile X and epilepsy. Mr Clements doesn’t have any intellectual disabilities, whereas his brother does – but they are both autistic, with traits that meet diagnostic guidelines for processing differences. (Which include, according to the fascinating study that Mr Clements quotes: Emotion recognition; theory of mind (the ability to understand that other people have their own intentions); cognitive flexibility (the ability to transition from one task to another); activity planning; inhibition; evoked brain responses (the nervous system’s response to sensory stimulation), and brain volume.)
The lower end?
The amalgamation of all autism spectrum neurologies into the one diagnostic heading of ‘autism’ has, as Mr Clements explained, caused may individuals to agree that autism needs dividing (once again) into separate conditions, perhaps even starting with the reintroduction of Asperger Syndrome. (Despite its unpleasant connotations with Hans Asperger, even though he did not coin the eponymous diagnostic phrase himself).
This author concedes the point that ‘contemporary autism discourse and research are both skewed in favour of the verbally able autistic population, at the expense of the most vulnerable.’ One can see what Mr Clements was getting at; however saying that: ‘The lower end of the autism spectrum [should be] treated with the seriousness it deserves’ does use dehumanising language. Surely we need to stop referring to loved ones (as presumably Mr Clements’ brother is) as being at the ‘lower end’ of anything, and should publish articles that help delve into the neurology of autism, and look at the co-existing conditions that make someone ‘severely autistic’, as Mr Clements writes? (Or, to use more acceptable language, lead to the person having higher support needs.)
Mr Clements does seem to have some neurodiverse leanings, and admits on his website that he had been: ‘Conditioned to do all in my power to conceal [his brother] Jack’s disability and to be ashamed of his obviously autistic behaviours,’ but does concede there that: ‘Autistic people are a varied bunch of individuals with a multitude of different strengths and weaknesses.’ Mr Clements describes his own autism (on his website) as: ‘A difference in neurology that has both good and bad sides’, and charmingly explains that: ‘Autistic people tend to see life in much higher resolution.’
(It is also worth noting within a feature that touches on neurodiversity, some new phrasing. The neurodiversity paradigm is widely said to represent the concept that autism is a difference in neurology (as opposed to a disability), and was first used by Judy Singer, an autistic social scientist, in a publication called The Atlantic, in 1998. However, Ms. Singer has recently stated that: ‘Neurodiversity is NOT a synonym for neurological disability, divergence or difference‘. She reportedly now prefers the term ‘Neurominorities’ for those with ‘atypical cognition’.)
READ OUR TAKE ON NEURODIVERSITY HERE –
What is neurodiversity, in the context of autism?
So, back to the Guardian article, and to conclude: presumably, the original, interesting research made its way to the newspaper news desks, and Mr Clements was invited to give his unique take on it. But with some more balanced writing, it could have been a much more inclusive feature.
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. We’d also love your feedback on our posts!
It is worth exploring what neurodiversity means, in the context of autism. Many adult autists that support the neurodiversity paradigm don’t need the concept spelling out, but we here at Spectra.blog, we have many more people that are ‘new’ to the world of autism asking about it, than we do autists who are fully paid up members of the autie club. (Please note, this content represents the author’s opinion. There’s no real wrong or right, as all of us who are involved in autism in any capacity have experienced different exposure to it, eg. from our own ‘autistic’ perspective, or as a parent/carer/family member/educator. Please don’t berate us for expressing an opinion!).
The neurodiversity paradigm, when applied to the discussions around autism, represents the concept that autism is a difference in neurology, as opposed to a disability. The term was first used by Judy Singer, an autistic social scientist, in a publication called The Atlantic, in 1998. People who support the neurodiversity paradigm tend to prefer to use autism spectrum neurology over words like disability and disorder – however the various identifications and descriptions within the overall debate do lead to differences of opinion. (Interestingly, Ms. Singer has recently stated that: ‘Neurodiversity is NOT a synonym for neurological disability, divergence or difference’. She reportedly now prefers the term ‘Neurominorities’ for those with ‘atypical cognition’.)
Autism is, at its core, widely considered to be a difference in processing. The neurodiversity movement believes that while clinical interventions for specific co-existing conditions or issues that cause challenges (like talking therapies for anxiety, speech therapies for language delay, or medications for epilepsy, as examples) are widely advocated, autism itself is not necessarily a disease or disorder. (It is worth remembering however that the UK’s Equality Act and the Children And Families Act both class autism as a disability, as does the National Autistic Society – so anyone going through autism assessment, and issues connected to education or any local authority intervention or support, will likely come across the terms disorder and maybe disability, whether or not they use them within their own vocabulary.)
Let’s consider some of the differences of opinion mentioned above, and why some individuals may have different viewpoints. For example, many individuals who are autistic, with few additional conditions that are debilitating, and with minimal support needs, may not consider themselves to be disabled (or even differently abled), or to have a disorder. They may simply identify as having autism spectrum neurology. Negative issues or traits (relating to socialisation and communication, as examples) are only disabilities in that social context – in a different environment, they may cease to be a difficulty at all. Other individuals, most notably parents of autists, might argue that their son or daughter’s autism is ‘disabling’, and does make the son or daughter feel ‘disordered’. (Some autists themselves also feel this way.) It simply depends on one’s own experiences and exposure to autism.
Some parents of autists may support the medical paradigm (which can be seen as the opposite of the neurodiversity concept), because having a ‘disorder’ diagnosis can mean access to necessary support and services. Gaining an autism diagnosis can be a lengthy process, and sometimes the last thing on one’s mind at this stage is vocabulary, and the distinctions of being neurodiverse or differently abled.
There is also the question hinted at above, of what makes one disabled – to what extent is it a social issue, in terms of access and infrastructure, as well as awareness? E.g. Is it a condition that disables you, or the lack of infrastructure and support in the community? If you go ‘into’ any social media support group consisting of autistic individuals and their families (and perhaps also to ‘real life’ social support groups; although these probably evoke more polite responses!), you will find a myriad of opinions on this subject. Often, when discussing the neurodiversity paradigm, people assume there is a wrong and a right, or a true and false, based on their own experiences of autism, when in fact we are all allowed an opinion on what autism is, and what it means to us. To reiterate, it simply depends on one’s own experiences and exposure to autism. Some people also question what neurologies neurodiversity should include. For true diversity, surely all neurologies should be included, just as in the case of ethnic diversity, where all ethnicities are included? However, if the online autism community is to be believed, some people seemingly want neurodiversity to be a select group; for example, to include autism and ADHD, but perhaps not dyslexia or dyspraxia. This author advocates that for true diversity, all neurologies should be included within the banner or umbrella
Continuing the discussion over the use of the word disability versus the neurodiversity paradigm, there is also the issue of co-existing conditions to consider, in terms of whether it is these conditions that make one ‘disordered’ or disabled (or differently abled). After all, autism is at its core a processing difference; but would the addition of a further condition make one ‘disabled’ or ‘dis-ordered’? Of course, it depends on the individual.
It is also worth adding that neurodiversity advocates are firmly against any behavioural ‘therapies’ and interventions such as ABA, that are coercive in any way, and seek to make autists appear more neurotypical, or NT. (This aversion does not include conventional, respected therapies such as talking, play, speech and language and occupational therapies.) The behavioural therapies targeted at autistic individuals, that alarm neurodiversity advocates so, essentially seek to break down what the ‘therapist’ sees as either desirable or undesirable behaviours into repetitive steps, rewarding the autistic child for actions the ‘therapist’ deems appropriate. Some parents of autists may claim (while their offspring are still children) that the behavioural training they arranged for their autistic child has helped, or seen benefits; but this author remains to be convinced by a single autistic adult who has endured behavioural training that such ‘therapies’ are in fact beneficial, rather than a system that’s akin to teaching dogs obedience skills, or not to bark excessively.
Moving back to the medical versus social paradigm – here’s an example of the medical paradigm in action. To compete as an autistic athlete under Para-athletic guidelines, one is considered to have an ‘intellectual disability’, as per guidelines in the International Paralympic Committee (IPC) Athletics Classification Handbook – see: www.paralympic.org/ipc-handbook . (However, the definition here does talk about functioning and adaptive behaviour; conceptual wording that neurodiversity advocates surely can’t argue with). Intellectual disability is defined by the IPC as: ‘A limitation in intellectual functioning and adaptive behaviour as expressed in conceptual, social and practical adaptive skills, which originates before the age of 18’. (As in the case of British autistic swimmer Jessica-Jane Applegate MBE, classified as S14, e.g. a swimmer with an intellectual impairment).
However, as we have discussed elsewhere on the site, autism as a neurology does not necessarily equate to intellectual disability. Only around half of autists are thought to have intellectual disabilities as well. One can see how problematic such semantics are for the international Paralympic committee, however! By virtue of the whole concept of the Paralympic movement (developed seventy years ago), people with ‘physical, visual and intellectual disabilities’ – are considered eligible to compete against one another in their chosen sport. E.g. the para-athletic system is based on a medical disability model. Presumably if you are an autistic para-athlete labelled as having an intellectual disability, even if you don’t consider yourself intellectually disabled, you accept the ‘label’ in order to compete in your sport, and focus more on the ‘softer’ description of having limitations in intellectual functioning and adaptive behaviour.
Perhaps some of the issues concerning whether to embrace the neurodiversity paradigm or not stem from all autism profiles being grouped together. When there were more functioning labels in use, it was perhaps easier for individuals to find their clan. Now that we (autists) are all in the same clan, trying to find common ground with other autists and their family members can be problematic, as the spectrum (and our individual experiences of autism) vary so much.
The author’s view
While I do massively support the neurodiversity paradigm, equally, the words disability and disorder don’t offend me as an autist and a parent of a neurodiverse child, if someone else uses them without malice. It is down to each individual, and their experiences shape their language. I don’t actively consider myself to have a disability, but I can see why the National Autistic Society refers to autism as a disability as part of a social, political and legal model. I don’t mind the abbreviation ASD (with D for disorder), but I understand that many followers of my articles prefer ASC (e.g. C for condition), or even more preferably, ASN (e.g. N for neurology).
However, I do think there is a good argument for sometimes including ASD and ASC as terms online. This is because with schools and clinicians using the terms, and the clinical studies that underpin a degree of our understanding of autism using medical terms like D for disability, providers of information need to make it easy to find online. If you are someone starting on your autism journey (as an individual, family member or professional), you want access to facts and information.
I wish there was less division within the autism community, especially between the parents of autists (who sometimes use terms like ‘Autism Mom / Mum’, which really riles autists!), and the autistics themselves. Furthermore, the idea of making neurodiversity a select club that only people of certain neurologies are eligible for is galling. And I often get challenged on the language I use in writing (e.g. mentioning ‘disorder’) because an individual has a different opinion to me. But we are all entitled to our own opinions.
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. We’d also love your feedback on our posts!