Enabled by a label

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An early autism diagnosis can really open up pathways to support

In today’s society, just about everything we come into contact with has a label. From the tin of soup you ate for lunch to the bossy woman at number 26, labels are unavoidable. Essentially, a label is just a name, a tag to define something, but some are deemed more restrictive than others.

For instance, it’s widely known that until fairly recently the public perception of mental ill health often stigmatised individuals, leaving many feeling segregated or pigeonholed by their diagnosis. This generally isn’t the case within the realms of physical health conditions, where a label tends to guide clinicians in their treatment rather than seek to define an individual’s personality or behaviour.

Within the spectrum of SEN, a label can be an extremely helpful tool in getting the right help for the right person from the correct set of specialist professionals.

At the end of March 2016, the UK media widely reported the news that government figures for England obtained by the Conservatives showed more than 4,000 incidents occurred last year resulting in suspensions of children within the school system; 100 of these children were under the age of four. These figures came from the Department for Education’s Permanent and Fixed Term Exclusions Report for 2013-14, which also confirms that the vast majority of excluded children across the board have SEN. Even more astounding was the news that pupils with SEN but without a statemented diagnosis are around nine times more likely to receive a permanent exclusion than students without SEN.

The importance of a diagnosis

Dr Judith Brown, Head of Knowledge and Expertise at the National Autistic Society (NAS) explains why early diagnosis is so important: “recent research shows that the average age of diagnosis for children is four-and-a-half, which means that many are going to school without teachers understanding their needs or appropriate support being put in place. Others go through their lives without a diagnosis or appropriate support, or are diagnosed well into adulthood, which means they’ve grown up not understanding who they are and why they seem to struggle with things others seem to take for granted”.

For some parents, receiving an official diagnosis of autism or ASD doesn’t seem necessary. Some are resistant to their child being deemed to have a disability, whilst others feel that just knowing the probable cause for their child’s difficulties is enough.

However, many parents report feeling a sense of relief once they know with certainty the cause of their child’s behaviour; it provides a conclusion to what was previously just a host of symptoms and challenges, and opens the door for support and guidance they wouldn’t have received otherwise.

Dr Brown elaborates: “some families find it overwhelming, both in terms of what it means to them and how they can get support. Others say it’s a huge relief, having spent years battling to get their needs understood. In every case, it’s vital they’re given information about autism and where to find support, which is often a challenge in itself”.

Fighting for understanding

Joanna Smith spent two years negotiating with various professionals before her son Joshua (pictured above with Joanna) received his official diagnosis of autism at the age of three. Joanna had noticed some difference between Joshua’s behaviour and that of other babies his age when he was just six months old. During his one-year health check she recalls being given a questionnaire to complete with developmental milestones he should have been meeting. She remembers clearly this being the first time she was certain that something about her son was different.

“He was quiet and never babbled and he used to rock himself in a bouncing chair repetitively. Initially, we thought he was just being funny and trying to make us laugh but his behaviour was so persistent it made us wonder”, says Joanna. “Now we know it was his way of self-soothing and by two years old it became very clear he was autistic”.

Joanna proactively sought help and used the internet to research Joshua’s behaviour. She watched videos online and began to seek professional advice. She started by approaching her GP and over time, and after many long waiting lists, saw a host of specialists including a child psychologist and a speech and language therapist; eventually Joshua was given a diagnosis of autism. “We were thrilled to bits when it was confirmed. We had known deep down for two years and felt very relieved to finally have our opinions validated”, says Joanna.

Since then, Joshua has benefited from increased support at nursery, including one-to-one time with staff, and the family have just received conformation of his EHC (education, health and care) plan, meaning appropriate measures should be in place when he starts school in September.

“I’m very happy he has received his diagnosis so young. It means I can provide a happier childhood for him with the right help, and we can support him appropriately into adulthood. If someone said to me ‘would you take his autism away?’, I would say ‘no’, because that wouldn’t be my son anymore. That is who he is and in my eyes it’s not a disability, just a part of him. The only thing I worry about is how society will treat him. He will be a vulnerable adult and what if I wasn’t around to look after him? Would other people take advantage of the way he is?”, says Joanna.

Beyond awareness

With TV shows like The A Word hitting our screens, public awareness seems to gradually be increasing. The National Autistic Society (NAS) spent over a year working with writers of the show to ensure the diagnostic process was portrayed accurately and feel that depictions such as this can hugely influence public understanding.

“… growing up with autism can be difficult but we’ve seen again and again how awareness, understanding and support from an early age can make a huge difference; more needs to be done to improve understanding of autism and the different ways it can affect people, so it can be identified by professionals earlier and support put in place”, says Dr Brown.

In 2015, a poll conducted by the NAS and YouGov found that 99.5 per cent of people in the UK have heard of autism, meaning in some way, nearly all of us are aware. However, the poll also showed that just 16 per cent of autistic people and their families feel the public understand autism meaningfully and what life is really like for individuals with this label.

A recent report by the charity tells us that “Hundreds of thousands of autistic people and their families are experiencing social isolation because they are worried about how the public will behave towards them when they leave the house. The vast majority have experienced judgemental attitudes or hostility.” However, we also know that increased recognition of autism will mean members of the public are less likely to comment and tut, give judgemental looks or even ask families to leave places like cinemas and restaurants.

It is important that we all continue to challenge the misconceptions and stereotypes surrounding the label “autistic”, to prevent people with autism feeling isolated or unwelcome in public. We need to open the door for an autistic label to enable rather than disable, and provide support and assistance that families may not have benefited from otherwise. Such a label can help represent a wonderfully unique child and instigate understanding and kindness rather than judgment; after all, how boring would the world be if we were all the same?

Further information

Caroline Davies is a mother of two toddlers, freelance writer and mental health practitioner based in Hampshire:
cdavieswrites.weebly.com

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autism
Southern Health Foundation Trust

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