Autism and the NAS: raising awareness of the invisible disorder

The National Autistic Society was founded in 1962 and now has around 20,000 members.

“Autism probably isn’t the first charitable cause that springs to mind. Yet when I tell people that I work for the National Autistic Society, I am amazed at how many people reply that they have a friend with autism, a brother or a sister with autism, that they themselves have autism. Unless you know somebody with autism, you don’t appreciate its relevance.” – Deborah Garland, NAS representative.

The National Autistic Society (NAS) is the leading UK charity for people affected by autism spectrum disorders (ASD): lifelong disabilities of communication and behaviour. Up to one in every hundred people is thought to have ASD, yet as autism gains media exposure, its nature, and the role of the NAS, remains surprisingly obscure. I met their representative, Deborah Garland, at the NAS resource centre in Newcastle to find out more. Shuffling past children charging out to enjoy the sunshine, we stepped into a small room, tucked away within the building. My eyes were caught by flyers pinned across every spare inch of wall, each displaying the names of a different publicity campaign run by the NAS. I started by asking what exactly autism was. Was the film Rain Man a good representation? Deborah seemed doubtful:

“It highlighted autism, but has led people to assume a stereotype. In reality, individuals on different points of the autistic spectrum are affected in different ways. If you meet one person with autism… you’ve met just one person with autism.”

“Then what is autism?”

“Autism is a lifelong developmental disorder affecting how somebody sees the world, influencing communication, imagination and interaction. It also causes sensory difficulties, such as hypersensitivity. A lot of the individuals we support become socially isolated, and many families first contact us because their children are struggling or being bullied at school. Most individuals with autism do want to fit in, but lack the social toolkit, hence picking up social cues becomes very difficult. But autism is an invisible disability, so other people don’t see how it’s affecting an individual. If children can use language, people around them probably assume that all their abilities are higher than they actually are. Those children might find it difficult to cope in an environment, with all its changing sensory information and unclear social cues. But this is invisible to everybody around them, and so children are just assumed to be being naughty or disruptive. In the workplace, adults with autism have similar difficulties, and many struggle to find or retain employment. Autism also puts a huge strain on the family. Families can’t really have ‘normal’ activities, and there’s a very high breakup of marriages between parents of children with autism.”

“So what exactly does the NAS do?”

“Well, at this resource centre, I run parents and partner support groups, for those who have children or partners with ASD. I also run drop-in sessions, giving people somewhere to chat about anything. Often, that’s ‘we’ve just had a diagnosis – what now?’. A lot of families in that position come to the NAS feeling unsure of where to go next, what autism is and what to do for the member of their family who’s been diagnosed. In the current financial climate, several families have had benefits cut, even things like blue badges refused: people assume that if somebody can walk and talk, they understand what’s going on, but that’s not necessarily the case. Many people with autism have considerable difficulty even navigating a busy street or car park. So, we try to help families reclaim appropriate support, or overcome such difficulties. But there’s a strong network amongst these families, and we try to keep people in touch with others who are in the same situation and might be able to provide support, which they need, especially when coming to terms with the diagnosis. We also have social groups for young people and adults, which give people with ASD a place where they can come along and just be themselves. The groups are based in Durham, Sunderland and Newcastle, and there’s a really wide range of people who come along, people in their teens and in their sixties!”

“Surely that’s problematic when autistic people struggle with social skills?”

Deborah shakes her head: “We take away the pressure that, for people with autism, usually comes with fitting in; people there understand each other, they can make friends. We have trained staff on hand who can guide them through social skills and facilitate interaction within the group. So, that’s something the resource centres run locally. Nationally, we campaign to raise awareness of the difficulties faced by people with autism. One previous campaign focused on raising teachers’ awareness of autism, and of the difficulties children face in school. At the moment, we’re trying to get all of our members – or anybody interested – to write to or approach their local MP and highlight the provision needed in their area. For instance, adults with autism need clearer diagnostic pathways, as well as equal opportunities for housing, employment, and access to appropriate professionals. That’s nowhere near the level it should be right now, to be honest; even many professionals today still don’t realise how autism really affects peoples’ lives.”

“Today?”

“Well awareness is improving: ten years ago, autism was considered very rare, but the NAS has since raised awareness, so people are more attuned to autism. Diagnosis is better now than ever before: many adults are receiving diagnosis in their twenties, thirties, forties and fifties – they’ve always had autism, we’re just much better at diagnosing it now than when those people were children. Plus, if everybody was aware of autism, it would make life much easier for people on the spectrum – the disorder would be less invisible.”

“So, if readers are interested and want to help the NAS – what would you say to them?”

“We really value enthusiastic people with an interest in autism, and our cause is incredibly motivating to get involved with. I’ve had a personal interest in autism for a long time, and I think it’s important to support people in that situation, however you think you can. We have a lot of fundraising opportunities, both on national and local levels. People take the Three Peaks Challenge and run the Great North Run for us, and we’ve had people put on fancy dress nights in a local pub. Our funding from local authorities has been cut, so we hugely appreciate people who do things like that, and they’re also raising awareness of autism. Personally, I can’t tell you how much I love working for the NAS, because the families and individuals you benefit… they’re just amazing! It is so rewarding to be able to give that support.”

“What if somebody reading this believes that they might have autism?”

“I’d say to them that looking for support can be daunting, but we work with a lot of people with autism and understand many of the difficulties involved. We can chat through the process of receiving a diagnosis, and how to take things further. We are here to help, so please get in touch. But awareness can only improve: the more anybody can do to support people with autism, even people you know personally, the more they will help those lives.”

If you would like to know more about autism, visit the NAS website at www.autism.org.uk. For local information, contact the North-East Autism Resource Centre on 0191 2296020 or e-mail deborah.garland@nas.org.uk.

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