Autistic Spectrum Disorders Toolkit

Autism is a neurodevelopmental disorder that affects at least 1% of the population.

There is an urgent need to improve healthcare of people with autism. Research shows that autistic people die on average 16 years earlier than the general population and this increases if they also have learning disabilities.

This Autism Toolkit aims to be a 'one stop shop', a user-friendly guide to autism for primary care professionals, people affected by autism, clinical commissioning groups, as well as interested members of the general public.

Clinical resources and guidance for practices

This section contains useful articles for primary care teams on what autism is, how it is screened for and diagnosed, as well as how best to support your patients with autism.

Screening and diagnosis

Making your surgery autism friendly

A resource pack to support GPs and their teams to make their surgeries more visibly friendly for patients with an Autism Spectrum Disorder. Contains many of the above resources, and was mailed to each practice in May 2016.

Special considerations for ASD patients: autism in females

Females may present in different ways e.g. they may appear more sociable than males on the spectrum. They still, however, may find life challenging without the right kind of support.

Other awareness issues for professionals in primary care

Quality Improvement

To access shared learning networks to assist you in applying practical QI methodologies to better treat this clinical area, join our QI Ready platform.

Organisations that can support your patients

People with autism and their carers can sometimes feel isolated. The list below contains national and regional organisations that provide practical support and connect people on the autistic spectrum with others facing similar challenges.

National

  • The National Autistic Society (NAS) The leading UK charity for autistic people (including those with Asperger syndrome) and their families. The NAS has a bookshop with various resources for families and professionals, including free downloadable guides.
  • Autism Alliance A major UK network of specialist autism charities. Together, they support many thousands of people with autism, including more than 2,000 adults in residential homes, and thousands more through outreach services. They run schools for children with autism, and train their own staff as well as staff in the public and private sectors.
  • Ambitious about Autism A national charity for children and young people with autism. They provide services, raise awareness and understanding, and campaign for change. 

Regional resources

Below are a number of localised resources. The NAS helpline (0808 800 4104) can help with further information.

Devolved nations

Online resources

  • Autism Connect An online social network for people with autism and their families. A place to meet new people, make friends and find support within the autism community.

Resources and guidance for patients and carers

This section contains useful articles for people on the autistic spectrum, on what autism is, and how to make the most of visits to the doctor, plus other background information and resources.

Background information

Visiting your GP

Getting a diagnosis

  • How do I get a diagnosis for my child? If you think your child may have autism, discuss this with your GP or health visitor. You can also contact the National Autistic Society for advice. Here is a guide on what to do.
  • How do I get a diagnosis as an adult? Referral and diagnostic pathways differ depending on where you live. Your first port of call is likely to be your GP.  Below is a guide on what to do if you think you may have autism and want to be tested.

Other useful information for people on the autistic spectrum

Useful resources

National reports and legislation for practitioners

Key legislation and guidance for primary healthcare professionals.

Legislation and strategy

National guidance and standards

Mental Capacity Act

Other reports and research

Resources for training, appraisal, and research

These resources can be used for CPD purposes, alongside the above clinical resources.

Videos

These videos can be used to as a guide for clinicians, and include testimonials and advice from people on the autistic spectrum.

Presentations 

The below presentations were used at RCGP Autism Awareness Workshops, and are intended to be used by GPs and practice staff in their own surgeries.

Research Organisations

  • Autistica is a charity which both funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions.
  • Research Autism a charity that carries out high quality, independent research into new and existing health, education, social and other interventions. Their goal is the improvement of quality of life and outlook for the individuals affected and those around them.
  • Adult Autism Spectrum Cohort UK Recruiting adults on the autism spectrum (aged 16+) and relatives of adults for a new and important national research project, ASC-UK.

Background and information for commissioners

The RCGP has identified autism as a clinical priority and between 2014 and 2017 it will be facilitating projects aimed at improving autism awareness and management in primary care.

A survey of GPs conducted in 2015 showed that although many are knowledgeable about autism, they lack confidence in their abilities to manage patients on the spectrum and the need more support from local specialist services.

There is an urgent need to improve healthcare of people with autism. New research shows that autistic people die on average 16 years earlier than the general population and the gap in mortality increases if they also have learning disabilities.

GPs need to be aware of certain adaptations required when engaging with a patient who has autism. For example, although we are generally taught to use open ended questions, closed questioning can be more appropriate in consultations with an autistic child or adult. Patient with autism can also have an increased sensitivity to side effects of medications, indeed they may have idiosyncratic reactions to drugs.

In May 2016, The RCGP's Clinical News ebulletin focused specially on the theme of autism. The following articles were included:

To celebrate the Autistic Spectrum Disorders clinical priority, Jonathan Andrews of the Westminster Autism Commission, has written a poem about Autism. Jonathan is on the autistic spectrum and has won national, pan-European and pan-Commonwealth awards for his advocacy, which ensures the voices of autistic people are heard in positions of power.

Eye Contact

Sorry, but the bridge of your nose is peeling like
Old wallpaper, and the falling flakes
Are rather disconcerting.

Have you tried moisturising?
Forgive my bluntness; it’s just one of those
Things I notice, when I’m trapped in a chat
And have to summon up a civil face.

I spend aeons staring at your nose; because, to you,
It looks as though we’ve interlocked our gaze.
I got that off a dating site. I guess
I’m a Lothario, given the swathes
Of men and women that I use it on.

I’ve tried to make contact before. But when I stare
Into the window of your soul, Abyss
Stares back at me: A raging, unquenched fire
Of hungry skull-burrowing worms.

So then I have to rip the link, and tear
My eyes away, to whatever’s near;
Perhaps the table, perhaps the embroidered
Pillow resting on the swivel-chair.

But then you’d wonder why; assume
A gnat, or flashing light, had grabbed my sight;
Query why I was so grotesquely rude, to break
Mid-sentence. Then the seeds of doubt

In my devotion, and your thoughts of me
As some strange oddity would be confirmed.
So, all else being equal, I’d rather stare
At the skin-flakes peeling from your nose.

The toolkit has been developed in partnership with the Clinical Innovation And Research Centre. Please send any comments or suggestions to circ@rcgp.org.uk

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