Understanding autism

07 November 2019

In the first of a two-part series, journalist Colleen Shannon asks how well we are supporting autistic children and their families.

It is 10 years since the Autism Act came into force in England, and it’s fair to ask how much progress there has been over the past decade.

To mark the anniversary, the National Autistic Society (NAS) and the All-Party Parliamentary Group on Autism have published an in-depth research report that looks at this question (NAS, 2019).

While there have been welcome improvements in public understanding and recognition of autism, the report says, there is still ‘deeply concerning unmet need’.

This is the view that emerges from the research, which included a survey of more than 11,000 autistic people and their families in England and had additional input from professional experts. ‘Many thousands of autistic people who need support in the classroom, at home, at work and in every aspect of everyday life, simply are not getting it,’ the report says.

Of the 600,000 autistic people in England, too many are facing health inequalities, mental health crises, social isolation and even early death.

Given that more than one in 100 people are on the autistic spectrum – which makes it about as common as dementia – this is a very big gap (NHS Digital, 2012).

The language you use to talk about autism can affect the self-esteem of children and young people

What about the children?

The Autism Act 2009 placed a duty on government to produce a strategy for autistic adults in England, review it regularly, and issue statutory guidance for local authorities. The legislation does not apply in Wales and Scotland, although both have autism strategies (Welsh Government, 2018; Scottish Government, 2011). Northern Ireland has its own Autism Act (2011).

Late last year, the government announced that its updated autism strategy for England would cover autistic people of all ages, including children (NAS, 2018).

Practitioners and clinicians can already refer to separate NICE guidelines for adults, and for children and young people (NICE, 2014; 2013; 2012; 2011). In England, these guidelines call for a diagnostic assessment within three months of initial referral but, anecdotally, the wait can be a lot longer. An upcoming set of data from NHS Digital should provide some hard facts to work with.

In Scotland, guidelines on autism from the Scottish Intercollegiate Guidelines Network (SIGN) say that ‘as part of the core programme of child health surveillance, healthcare professionals can aid early identification of children requiring further assessment for ASD [autism spectrum disorders] and other developmental disorders.

Clinical assessment should incorporate a high level of vigilance for features suggestive of ASD in the domains of social interaction and play, speech, language and communication difficulties and behaviour’ (SIGN, 2016).

There is no doubt that community practitioners (CPs) have a vital role to play in identifying possible autism and helping families get a diagnosis – but what do you look for?

What is autism, anyway?

Denise Gentry, clinical nurse specialist and clinical lead for learning disabilities and ASD at South West London & St George’s Mental Health NHS Trust, has some practical advice.

‘The key thing is to view the child or young person as an individual. We know that no two people with ASD will present as the same, although many will have similar traits.’ She explains that assessment criteria are based on the triad of impairment, which covers the person’s social communication, social interaction and social imagination, and how these impact on their day-to-day life skills and choices.

According to the National Autistic Society, each individual will have different strengths and challenges, from requiring 24-hour care to simply needing clearer communication, a little longer tO do things at work and school, 
and an environment that suits their sensory needs.

Deborah Brownson, MBE, a campaigner who has two autistic sons, agrees it’s essential to see autistic people as individuals, with varying abilities and needs. She would add that, in the opinion of many autistic people and their families, autism should be seen as a difference and not a disorder.

‘So much of the literature is negative,’ she says. ‘It talks about disability, something that needs fixing or pity. But my hope is that it will come to be seen as a neurological difference in the way the brain is wired. That doesn’t mean it’s wrong, or not normal.’

Identifying autism can be complicated by the fact that it may co-exist with learning disabilities or with mental health problems such as obsessive-compulsive disorder, Tourette’s syndrome and attention deficit hyperactivity disorder, Denise says.

‘Anxiety is often an underlying cause to most children’s and young people’s difficulties, and can be a driver for behaviour that challenges those people and services around them. Having a clear understanding and management plan to reduce anxiety is key.’

What support can you offer?

Denise suggests that CPs can help by ensuring that everyone around the child or young person – be that in educational, healthcare or social settings – understands the individual’s needs, and by providing input when required.

She adds that carers often feel they don’t have the skills to support an autistic child or young person in times of distress, which often occurs during transitions, puberty or a change of environment.

Coping with the fallout

Unfortunately, after families hear a diagnosis that goes off like a bombshell, they often feel alone and unsupported from there onwards, Deborah says. To help, she and two co-founders are launching an app called Autism Plan, which provides resources and a forum for parents of autistic children. Without any marketing, the pilot version has already been downloaded some 3000 times since July. The group is currently seeking funding to expand the app for teenagers.

Above all, she hopes professionals will remember that the language they use to talk about autism sends important messages to children and young people, and can affect their self-esteem positively or negatively: ‘Listen to them, and let them excel in areas they most need to excel in.’    

In their own words

Charlotte Amelia Poe is a self-taught artist and writer from Suffolk and winner of the inaugural Spectrum Art Prize, whose book, How to be autistic, is published by Myriad Editions and whose blog can be found at capoe.co.uk

If you could give one main message to health visitors and school nurses, what would it be?

Please take a few extra moments to talk to those who appear to be struggling, or even those who don’t outwardly appear to be struggling but may be on the road to it. Look for the quiet kids, the kids who are looking more isolated and alone, the anxious kids.

If possible, please be aware of mental health patterns as much as you can, and be quick to act on any decline you see. It is much easier to prevent a crisis than to treat one, and I think sometimes some kind of ‘sixth sense’ for this type of thing, developed through empathy and close attention, would be really helpful.  

What’s the most important thing you can do to help young people with undiagnosed autism?

Pursue a diagnosis, and support the family and the school through it, explaining that while the child may be acting in a ‘difficult’ manner, it is not the child’s fault, and they are struggling in a world which is getting more and more complex and upsetting to them.

Try to get as much understanding from parents, teachers and peers with a view to reducing bullying and any negative attitudes towards the child.  

What is the most important thing you can do to support young people after their diagnosis?

Because a diagnosis is a life-long thing, support needs to begin as early as possible, and needs to be continued for as long as possible. So the most important thing would be consistency and frequency of visits, seeing the same people at the same time, regularly, having routines in place for stuff like homework and having a safe space for the child to go when they are too overwhelmed to work productively in the classroom.

Being an unjudging ear is also very important, as knowing that there is an adult they can trust in the school is vital, and could be the difference between them bottling everything up unhealthily and being able to talk openly. 



National Autistic Society. (2019) The Autism Act, 10 years on: a report from the All Party Parliamentary Group on Autism on understanding, services and support for autistic people and their families in England. See: https://www.autism.org.uk/get-involved/media-centre/news/2019-09-09-not-... (accessed 16 October 2019).

NHS Digital. (2012) Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 adult psychiatric morbidity survey. See: https://digital.nhs.uk/data-and-information/publications/statistical/est... (accessed 16 October 2019).

Autism Act. (2009) See: https://www.legislation.gov.uk/ukpga/2009/15/contents (accessed 16 October 2019).

Welsh Government. (2018) Autistic spectrum disorder: updated delivery plan 2018-2021. See: https://gov.wales/sites/default/files/publications/2018-12/autistic-spec... (accessed 16 October 2019). 

Scottish Government. (2011) The Scottish strategy for autism: overview. See: http://www.autismstrategyscotland.org.uk/strategy/key-documents.html (accessed 16 October 2019).

Autism Act (Northern Ireland). (2011) See: http://www.legislation.gov.uk/nia/2011/27/contents/enacted (accessed 16 October 2019). 

National Autistic Society. (2018) Big news: national autism strategy to be extended to children (5 December 2018). See: https://www.autism.org.uk/get-involved/media-centre/news/2018-12-05-big-... (accessed 16 October 2019). 

NICE. (2014) Autism quality standard [QS51]. See: https://www.nice.org.uk/guidance/qs51 (accessed 16 October 2019).

NICE. (2011) Autism spectrum disorder in under 19s: recognition, referral and diagnosis. [CG128]. See: https://www.nice.org.uk/guidance/cg128 (accessed 16 October 2019).

NICE. (2013). Autism spectrum disorder in under 19s: support and management [CG170]. See: https://www.nice.org.uk/guidance/cg170 (accessed 16 October 2019). 

NICE. (2012) Autism spectrum disorder in adults: diagnosis and management [CG142]. See: https://www.nice.org.uk/guidance/cg142 (accessed 16 October 2019).

Scottish Intercollegiate Guidelines Network. (2016) Assessment, diagnosis and interventions for autism spectrum disorders. See: https://www.sign.ac.uk/sign-145-assessment,-diagnosis-and-interventions-... (accessed 16 October 2019).

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