This year, World Autism Awareness Week is from 28 March to 3 April, and to mark this we’d like to provide some information and further resources linked to the Centre’s protected characteristic theme for 2021/2022 “Age”.

– Joint blog by Claire Johnson, Head of Quality Assurance and Regulatory Affairs and Josie Henley, Research Associate, Centre for Trials Research.

The 2022 World Autism Awareness Day observance from the UN includes an online event Inclusive Quality Education for All, Friday, 8 April 2022, 10:00 – 11:15 a.m. EST (15:00 – 16:15 BST). Registration is via the website and if you register, you will be sent a link to view the recording following the event.

https://www.un.org/en/observances/autism-day

Introduction to autism

Autism is a lifelong developmental disability which affects how people communicate and interact with the world. One in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK¹.  People on the autism spectrum have varying strengths and challenges for example some autistic people have an accompanying learning disability and need support to do everyday things like clean cook and exercise.  Other autistic people are in full time work, with little extra support.  Take a look at this video from the National Autistic Society:

https://www.youtube.com/watch?v=Lk4qs8jGN4U&t=2s

As autism is a spectrum condition, many autistic people meet some but not all of the diagnostic criteria for autism. Some experiences are severe, leading to the individual finding life very difficult, whereas some have more support in place and are more able to cope. This means that there might be two autistic people who are quite different, or who share only some of the traits. There is a stereotype of what an autistic person ‘looks like’, perhaps based on older portrayals of autistic people in films and literature. This might lead someone to be met with disbelief if they say that they’re autistic. There is a phrase among the autistic community: “If you’ve met one autistic person, you’ve met one autistic person.”

Autism in children

Signs of autism in young children include not responding to their name, avoiding eye contact, not smiling when you smile at them, getting emotionally overwhelmed by certain tastes, smells, sounds or textures (leading to an intense preference or dislike for certain clothing for instance), or a combination of too much sensory input, repetitive movements, such as flapping their hands, flicking their fingers or rocking their body, not talking as much as other children, including not talking at all for prolonged periods, and repeating the same phrases.

Signs of autism in older children include not seeming to understand what others are thinking or feeling, finding describing emotions in themselves or others very difficult, preferring a strict daily routine and getting emotionally overwhelmed if it changes or if they need to make a quick decision about a change, having a very keen interest in certain subjects or activities, not always understanding if they are being asked to do something so they might neglect tasks or get them wrong, finding it hard to make friends or preferring to be on their own, taking things very literally – for example, they may not understand phrases like “break a leg”, or understand when someone else is joking. Older children who are expected to start to take responsibility for their own lives might find it very difficult to make decisions such as how often to wash or change their clothes. They might be unable to work out which of the social rules can be ignored sometimes and which are crucial. It can be difficult, for instance, to understand when a social rule can be overruled, e.g., a rule about not shouting or interrupting people might lead an autistic teenager to feel unable to call out for help in an emergency.

Autism can sometimes be different in girls and boys. For example, autistic girls and female-assigned children may be quieter, may hide their feelings and may appear to cope better with social situations.  This means autism can be harder to spot in girls². Among the autistic community, this is due to what is known as “masking”, i.e., female-assigned children experience harsher punishments for behaviour that is seen as socially unacceptable (rudeness, not complying with dress or hygiene standards), meaning that they learn to work harder at learning these social rules.

There is a library of resources for parents and carers of autistic children here:

https://autismwales.org/en/parents-carers/information-for-an-autistic-child/

What happens when your autistic child turns 18?

Once a child reaches 18, changes can occur in support and care packages (if they have them – not all autistic children have support) and the transition from childhood to adulthood can be a complicated time and cause anxiety for the person and their family. This is the case for any young person in their transition to adulthood, but it is a much more anxiety-producing time when the young person has support and care needs. Additionally, the law is clear that every adult (when a young person turns 18), whatever their disability, has the right to make their own decisions, where they have capacity to do so, and should be supported to do so wherever possible.  The challenging behaviours foundation³ have produced some guidance on this:

7-How-do-my-family-members-rights-change-as-they-become-an-adult.pdf

Autism in adults

It is important to emphasize that autism has been vastly under-diagnosed in the past. It is estimated that there are a significant percentage of autistic adults who do not know that they meet the criteria for autism. This is especially so for women and female-assigned people, due to a combination of the stereotyped view of what autism is in previous decades and the “masking” mentioned above. In addition, the diagnosis of Autism Spectrum Condition (previously known as Asperger Syndrome or “high functioning” autism) is relatively recent. If, on reading this, you start to wonder about yourself or a relative, there is a lot of support available. Look at, for instance, the National Autistic Society website (link below).

Common signs of autism in adults are very similar to those outlined for older children, above. However, adults experience a heightened expectation that they will be able to perform socially and in more stressful situations, such as the workplace and parenting their own children (who are statistically more likely to be autistic than the children of non-autistic adults). Autistic adults might find it hard to understand what others are thinking or feeling and therefore seek more clarification or appear to be rude, self-centred, and not particularly interested in other people. They might get very anxious about social situations, find it hard to make friends or prefer to be on their own. As with children, autistic adults might have difficulty in knowing when to take information literally or when to assume someone is making a joke, and might strongly prefer a daily routine and meticulous planning for any expected change to routine, e.g., a holiday, change of job, house move etc.

Autistic adults often appear to not understand social “rules”, such as not talking over people, avoiding eye contact, getting too close to other people, or other aspects of socially acceptable public behaviour. As with autistic children, adults might have a very keen interest in certain subjects or activities. They might notice small details and patterns that others do not, and spot tiny differences in the pattern. This can be a very positive aspect of autism in terms of ability to perform a task that requires the skills of intense scrutiny. However, the downside of this is that as with autistic children, the intense sensory input can also lead to an overwhelm of sensory information, including visual, audio, taste, smell, and textures.

Autistic people can develop insight as they learn about themselves and their condition, what they can cope with and what they can’t. This puts them in a unique position to be able to advise and support other autistic people. There is a wide community of autistic adults and young adults, who offer peer support as well as the support offered by professionals. There are also a lot of resources for instance, self-help books written by autistic people (e.g. I Think I Might Be Autistic: A Guide to Autism by Cynthia Kim) and websites run by autistic people (e.g. The Girl With The Curly Hair https://thegirlwiththecurlyhair.co.uk/). With stigmatised conditions such as autism, it is often more comfortable to receive advice and support from other people with the condition than to go to professionals, as there is always the worry about being patronised or feeling ashamed. There is also often a long wait for assessment appointments for both children and adults, so a lot of people prefer to do their own research first.

As with children, autism can sometimes be different in women and men. For example, autistic women and female-assigned people may be quieter, may hide their feelings and may appear to cope better with social situations, for the same reasons noted above.

Integrated Autism Service

There are 7 Integrated Autism Services across Wales. They represent a partnership between Health Boards and Local Authorities. The services provide adult autism diagnostic assessment (sometimes jointly with other services), support and advice for autistic adults, parents/ carers, and professionals⁴.  More information can be found on there:  https://autismwales.org/en/integrated-autism-service/

Diagnosis as an adult

Some autistic people can go through childhood and early adulthood without an autism diagnosis, feeling that somehow, they don’t quite fit in.  Many people learn to cope with life in their own ways, although this may not be easy. Women and female-assigned people often receive autism diagnoses later than men. Recently in the news Christine McGuinness (model and TV personality) has talked about receiving her autism diagnoses in 2021 (Christine McGuinness – How my autism can help me to help my kids – Parents’ Toolkit – BBC Bitesize).

Here are some real-life stories from autistic adults receiving their diagnoses later in life:

• https://www.autism.org.uk/advice-and-guidance/stories/stories-from-the-spectrum-kate-fox
• https://www.autism.org.uk/advice-and-guidance/stories/stories-from-the-spectrum-peter-street

The National Autistic Society’s website provides a wealth of information and guidance for adults who think they may be autistic:

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pre-diagnosis/adults

References

1. https://www.autism.org.uk/advice-and-guidance/what-is-autism
2. nhs.co.uk/conditions/autism/signs/children/
3. Homepage for the Challenging Behaviour Foundation
4. https://autismwales.org/en/integrated-autism-service/