How does a child experience autism?

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1. What is autism?

We have two children on the autistic spectrum, which is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.

The autism diagnosis is set on a spectrum therefore it could be said that if you have met one person with autism, you’ve simply met one person with autism. Every person is different. It’s also important to remember that autism isn’t who a person is, they still have their own innate nature and character.

When you meet a child with autism, it may be obvious to you that they are different somehow - but equally, there may be absolutely no obvious sign of difference. Children and young people with autism are living around us all the time and we may not be aware of their condition. In fact, some people may even have autism and not realise this is the thing they have been struggling with.

2. Autism facts

An infographic explaining the extent of Autism in the UK

Source: National Autistic Society

3. Socialising and interacting

Teenagers from Kaimes Special School Association in Edinburgh enjoy a couple of hours on a dry ski slope every Friday. This activity has been funded by BBC Children in Need since 2014. Click the image below to get to know four of the children.

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Young people on the autistic spectrum live in a world that is difficult for others to understand, and one which has difficulty understanding their needs. They can have problems with social communication and interaction, which may result in low self-esteem and confidence. Socialising in groups can be difficult, so time away from school is often spent alone. That’s why the ski club is so important to the boys and girls at Kaimes.

4. The difference between boys and girls

Diagnosis

According to the National Autistic Society, by age 11 just one-fifth of girls with Asperger syndrome or high-functioning autism have been correctly diagnosed, compared with half of boys.

Females were also more likely to be misdiagnosed, with 42% of them being diagnosed with another condition, compared with 30% of males.

Once diagnosed, half (49%) of females with Asperger syndrome or high-functioning autism said the diagnosis made no difference to the support they received. This compares to 39% of males. The NAS survey suggests some quite clear challenges for women and girls with autism, particularly around getting their needs identified.

Research also shows that there are higher levels of misdiagnosis, delayed diagnosis, difficulty in accessing diagnosis and lack of diagnosis for girls and their families.

Symptoms

So how do girls present differently to boys? This is a generalisation, but many girls appear to be better at masking their symptoms. For instance, they may more ably learn the social skills, cues, the scripts of conversations, facial expressions and eye contact required to fit in with the world around them.

Of course, in one way this is an advantage, but in another they can easily slip under the radar- not quite fitting in, their needs unmet, their anxiety levels rising to critical. This “not fitting in” and anxiety can lead to school refusal, exclusion, victimisation, self-harm, eating disorders and depression and suicidal thoughts. This in turn leads to these young women accessing non-autism services that may not have the knowledge or skills to address the underlying issue.

5. Eddie's Day

Eddie is 17, is on the autistic spectrum and has attended Circus Eruption, a project funded by BBC Children in Need, for five years. Click on the image below to find out how Eddie experiences a day.

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6. How can I help?

Select the options below to see David and Carrie's advice on ways you can support children on the autistic spectrum and their parents.

Ask questions

In order for people to understand difference, they need to be allowed to ask questions, even if they might seem silly.

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Ask questions

It’s a fascinating condition, and once people understand it, many find they recognise autistic traits within themselves there is a whole world of overlap

Be patient

When you are chatting to someone with autism, be aware that they may take longer to process what you are saying.

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Be patient

That doesn’t mean you should talk slowly or over-pronounce- they are not stupid! Using a calm, reassuring tone of voice and smile can lower anxiety.

Rules and mindset

Rules provide a secure and stable framework for people with autism, but there is also the fear of getting the rules wrong.

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Rules and Mindset

If others don’t abide by them, it’s unfair- if they do everything right but no one seems to notice – that’s also unfair. Try to be aware of this mindset.

Change and uncertainty

It is often said that people with autism hate change. We would argue that it is uncertainty that causes the biggest distress.

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Change and uncertainty

Knowing what is going to happen makes things easier to endure. We can help the person with autism by making sure we give them as much detail as we can.