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