what is autism...

What follows is taken largely from the NAS's excellent website www.autism.org.uk/ Please visit their site for more information.

Autism is a lifelong developmental disability. It is part of the autism spectrum and is sometimes referred to as an autism spectrum disorder or an ASD.The word "spectrum" is used because, while people with autism share three main areas of difficulty, their condition will affect them in very different ways. Some are able to live relatively "everyday" lives. Others will require a lifetime of specialist support.

The three main areas of difficulty which all people with autism share are sometimes known as the triad of impairments. They are...

  • social communication - People with autism have difficulties with both verbal and non-verbal language. Many have a very literal understanding of language, and think people always mean exactly what they say. They struggle to pick up on facial expressions, tone of voice, jokes and sarcasm, many or all of the things we, often unconsciously, use to communicate.

"For people with autism, body language can appear just as foreign as Ancient Greek does to you or I"

  • social interaction - People with autism often have difficulty recognising or understanding other people's emotions and feelings, and expressing their own. This can make it more difficult for them to fit in socially. They may appear insensitive because they fail to recogise another's feelings, and prefer to be alone rather than seek the company of others. Often their behaviour appears "strange" because they have difficulty in expressing their own emotions and needs.

"Socialising does not come naturally. We have to learn it"

  • social imagination - Social imagination allows us to understand and predict other people's behaviour, make sense of abstract ideas, and to imagine situations outside our immediate daily routine. People with autism can often have trouble predicting what could happen next for example with potentially dangerous situations. They have difficulty engaging in imaginative play, with planning for change, and coping in unfamiliar situations. 

"We have trouble working out what other people know. We have more difficulty guessing what other people are thinking"

 

Other characteristics associated with autism...

People with autism often exhibit a love of routines. The world can seem a very confusing and unpredictable place to people with autism. Routines can help them cope. For example always travelling the same way to school, the same car, the same seat, same route and so on...

People with autism can often have heightened or diminished sensory sensitivity, and this can occur in any one of our senses. For example a background noise which we may block out may cause anxiety or even physical pain to a person with autism.

People with autism can experience intense special interests, such as in art, music, or even computing. For some this will remain as a hobby. For others, given the right help this interest/skill can be channeled into work or study. An excellent example of course is Stephen Wiltshire OBE, the much respected and successful artist.

People with autism can have learning disabilities, whether academic in school or socially at home, for example washing oneself, or getting dressed. As with all aspects of autism the degree of difficulty can vary. Some people with autism can live fairly independent lives, others may need constant care and support. What is important is that all people with autism can and do oversome many of their learning disabilities with the right sort of approach.

 

who is affected, the causes, and treatment...

Autism is more common than you might think and affects over half a million in the UK, that's close to one in five hundred. it appears to be more prevalent in men than in women and it is a lifelong condition. Children with autism grow up to become adults with autism.

Research into the causes of autism is ongoing. It is known that a combination of factors are involved both genetic and environmental. It is not caused by upbringing or social circumstance, nor is it the fault of the person with the condition.

There is no "cure" for autism. Help and support is given to those with autism using what are known as "interventions". The NAS website www.autism.org.uk/approaches has details of these.

  

The National Autistic Society...

The NAS champions the rights and interests of all people with autism. They accomplish this by working with local and central government bodies, as well as raising public awareness of autism and the issues facing those affected. The NAS relies on a wide range of fundraisers and donors and encourages volunteering, fundraising and campaigning on it's behalf

The NAS provide help continually across the UK. They have a dedicated team including many volunteers. Advice and support, both partical and emotional is offered to families affected by autism. Care and education is provided for adults and children with autism and training for parents, carers and other professionals. The NAS lobbys and campaigns on behalf of people with autism and publishes much information to increase awareness and aid understanding.

Much more detailed information about what the National Autistic Society do to help those with autism can be found on their website at www.autism.org.uk/about

  

living with autism...

I asked Bridget one of the fabulous people I met on the Paris ride last year to provide a personal account of living with austism. This is Bridget's experience...

Tom...

Tom was born in April 1990, so he's eighteen in April arrgh! (you're never old enough Bridget ed.) He has a younger sister Kath, who at fourteen is more concerned about Tom's clothes than his autism.

As a baby Tom was very placid. People said how lucky we were to have a baby so undemanding. Eye contact was poor but he did smile a lot. Our concern over general slow development led to assessment by teams fo medics, all looking for a label / reason / cause. Specialists included an Audiologist (hearing), Physiotherapist, Speech and Language Therapist, Occupational Therapist and then later Educational Psychologist. Nobody sadly was any help. Tom spent a couple of years at a special school before spending the last ten years being educated at home, after the school declared "we don't know what to do with him!"

Tom has a lovely life now. A team of six people provide one-to-one care for him. They all love him to bits, and by the way are a fantastic source of support for us as a family. They are currently focusing on developing his confidence in a variety of situations, for example school work, being out in the community, shopping, travelling on public transport and personal life skills. Tom's most recent success has been learning to take his socks off. He has no spoken language but manages to make his immediate needs known nonetheless. He loves music, and is very nonchalant about riding a horse that looks frighteningly large to me. Swimming is another interest although he seems intent on swallowing water by the gallon.

Steps are very small for Tom as you see. We do know that we have done the very best we could for him. He will always need a high level of care, but he is now a generally calm young person, full of smiles, who will go on learning new skills for the rest of his life.

 

                    

  

 

Andy also kindly gave me Anne and his own experiences of living with autism. Freddie was born in January 2002. He is just over five years old...

Freddie...

Autism is a lifelong disability that is both misunderstood and poorly supported by public services.

Coming to terms with a child who has autism is the most challenging problem any parents can face. The NAS provides a huge range of support to families affected by autism. Those of you with "neuro-typical" children can look forward to watching your sons and daughters achieve milestones that are taken for granted. For families with autistic children their futures are uncertain and they are likely to need huge amounts of care and support for the rest of their lives.

Whilst Freddie looks normal, he has no language or communications skills and finds social situations very difficult. He is though loving, affectionate and full of life. Like all children he deserves every opportunity to fulfil his potential. Through a donation to the NAS ou can help Freddie and many others like him, and their families manage their lives.

So please support Kev on his ambitious ride to raise money for the NAS. (thanks Hays, cheque in the post!).

 

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