Winchester Autism Group

Winchester Autism Group (WAG)

Phin Silberrad, Founder
Phin Silberrad, Founder

This month the Winchester Gazette have been finding out about Winchester Autism Group

Winchester Autism Group (WAG) was set up in 2011 when two local parents discovered there wasn’t an Autism support group within Winchester. Since then the group has evolved to offer information, advice and support to help local families access services and provisions in Hampshire that will help their children with Autism achieve better outcomes in their lives.

Autism is a serious, lifelong and disabling condition. Without the right support, it can have a profound – sometimes devastating – effect on individuals and families. There are an estimated 2802 children and young people aged 0-17 years or 3823 children and young people aged 0-24 years living with autism in Hampshire. There are likely to be a significant number of children and young people with autism in Hampshire who have not yet been diagnosed. 1

It is sometimes said only special people get chosen to be ‘special needs’ parents. Whatever the reason, it is something parents have to come to terms with, and get on with. Some people find it easier than others to accept, and for some it can be an emotional rollercoaster. A support group like ours can be a lifesaver, especially when you find other people who are going through the same journey and realise you are not alone.

From your experiences, how would you explain Autism to others?

Autism can be difficult to explain to others and one parent tells me she uses, ‘his brain is a wired a bit differently’, as a conversation opener. If I were explaining autism to a peer, I might say, ‘it may take a while for him to join in”. How people explain Autism to others can very much depend on the individual circumstances and their own personal approach.

What behaviours might a parent first notice that may lead to a diagnosis of a condition on the autism spectrum?

Parents could be forgiven for thinking it’s usually a professional who recognises and flags up autistic traits in a child. However, it’s often parents who recognise that something is different with their child. It may be from noticing behaviours that seem unusual compared with their peers, or from their own childhood experiences. Of course this may be influenced by whether the parent/s are themselves on the autism spectrum as research suggests that autism has largely genetic causes.Parents will instinctively make allowances for their child’s behaviour, and if a child is at the higher functioning end of the autism spectrum, it is often not until they start school that the difficulties emerge.

Some of the main signs that a child may have an autism spectrum disorder (ASD) may include:

* not drawing their parents’ or others’ attention to objects or events, for example pointing at a toy or a book, or at something that is happening nearby (or a child may eventually do this, but later than expected)

* carrying out activities in a repetitive way, for example always playing the same game in the same way, or repeatedly lining toys up in a particular order

* resistance to change or doing things differently

* emerging difficulties with social interaction, social communication and social imagination. These are the three main areas of difficulty experienced by all people with ASD and are sometimes called the ‘triad of impairments’

* behaviour such as biting, pinching, kicking, pica (putting inedible items in the mouth), or self-injurious behaviour.

Source: National Autistic Society

Can a diagnosis of a condition on the Autism spectrum be a lengthy process?

There can be a lengthy wait for an autism diagnosis. NICE (National Institute for Health and Care Excellence) have recommended that the autism diagnostic assessment is started within 3 months of referral to the autism team. However, research has shown that nationally this is not being achieved, and parents have reported waits of years rather than months. Some local parents have turned to private professionals for a diagnosis. This is not a decision that they have taken lightly due to the cost and a private diagnosis is out of reach for many families. A diagnosis may well be one of the hardest things to obtain, and when it comes, it is a signpost to help point us in the right direction, to begin to start to understand the road we are on. Although many parents may not even start to get the help and support the family needs and some find it a fight to get help and support just to keep yourself and family together. Here at WAG we can point families in the right direction and provide support while the family adjusts to the recent diagnosis.

Do you personally think more awareness of Autism is the key to better understanding and therefore provision for those with special needs?

Autism appears to have become ‘mainstreamed’ in 2016. For example, BBC1 screened in primetime, ‘The A Word’, a drama about a family going through the challenges of an autism diagnosis for their son. Some supermarket stores have offered exclusive ‘autism shopping” times, and some UK airports are promoting themselves as ‘autism friendly’ plus a Leamington restaurant has recently introduced ‘quality time dining’ for autistic customers. Awareness has never been greater, but awareness is not the same as understanding. There is a long way to go before there is acceptance and genuine inclusion. Friends and family can find it difficult to understand. They try to ‘get it’ and in some instances it can be impossible, as only someone who lives it can truly understand and this is where Winchester Autism Group comes in.

What are your thoughts about the recent announcement from Nicky Morgan, Secretary of State for Education, that Autism will now form part of the core learning for teachers as part of their initial training?

Personally I believe this is a welcome step, and one that many have long campaigned for. However, Autism is a spectrum condition and this means that, while all autistic people share certain difficulties, being autistic will affect them in different ways. Some autistic people may also have learning disabilities and other conditions. As a result, people need different levels of support, so it is vital that training recognises this otherwise there may be a real danger that we will end up with a one-size-fits-all approach. It is also essential to incorporate education of the peer group, if we are to move towards a truly inclusive community.

What support do you offer to people in Winchester living with Autism and their families?

We offer support for parents and carers, wherever they may be on their journey – a diagnosis is not necessary. We hold monthly coffee meetings, on the first Wednesday of each month between 10-12pm and further details of upcoming coffee mornings are posted on our Facebook page, and e-mailed directly to all subscribers of our mailing list. There is no charge for attendance as we are all volunteers with the sole aim to provide a community for people with Autism and families in Winchester and beyond. Social media plays a very important part in this support. We have a Facebook page for sharing information, and an invite-only Facebook group for local parents to support each other between meetings. We have aspirations to expand our support, but this very much depends on whether enough regular volunteers come forward.

What would you say to someone who is thinking about joining your group?

Do come along to a coffee morning – you will be welcome no matter what stage of the journey you’re at, or where you live. We have parents coming from all over Hampshire. It is very informal, and we are lovely people! If you would prefer to meet up individually, or in a smaller group, before coming to your first coffee morning, please get in touch and we may be able to organise something. If coffee mornings aren’t your thing or you’re unable to attend due to other commitments, please join our Facebook group for virtual support.

Please do remember that the support group is here for whenever and if you need a catch up between coffee mornings – just give us a shout!

To contact Winchester Autism Group, please email: winchesterautismgroup@gmail.com or alternatively visit their Facebook page on: http://www.facebook.com/WinchesterAutismGroup . Follow them on Twitter: @WAutismG

 

1 Source: Autism Strategy for Children and Young People in Hampshire 2014-2017

Mell Hall, Winchester Autism Group Member
Mell Hall, Winchester Autism Group Member

Jasper was only diagnosed with Dyspraxia when I asked to join because there are no support groups for Dyspraxia and it has very similar traits to ASD. I was welcomed immediately! Although ironically he is going for an ADOS test soon now, I’ve also learnt a lot! It’s been so helpful to get tips from experienced parents about anything from EHCPs to dealing with meltdowns! Mel

My son was going through a very long, slow and stressful referral process when I was told about WAG. When you don’t understand your child’s behaviour and are frustrated by the system that is supposed to help them, it’s a godsend to have a local support network who can offer practical advice or just somewhere to turn without judgement. Sharon

It is so beneficial having a place to meet and offer each other support in an informal way with people who truly understand Autism. It is helpful to share thoughts and feelings with others who have a true sense of what it means to have a child on the autism spectrum. Adrienne

 


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