Asperger's Syndrome

Woman with Asperger's Syndrome Missing

2011-06-12T03:23:00.000-07:00

June 09, 2011 12:06 PM EDT

A woman with Asperger's syndrome has been missing since May 31st and police are asking for anyone to call in or step forward with tips leading to finding her whereabouts. 26-year old Dana Depetro was last seen by her mother, who dropped her off at a McDonald's restaurant early in the morning of My 31st. The young woman was planning on eating breakfast before taking public transportation to work.

Dana Depetro is 5'9" and weighs approximately 140 lbs. She has blue eyes and blonde hair and was last seen wearing a black v-neck t-shirt and white skirt. Asperger's syndrome is a developmental disorder on the autism spectrum. Dana, like others with this disorder, suffer from social difficulties and related issues. With her disorder, her guardians are very worried about her disappearance.

Her family does believe they may know who she is with -- a man by the name of Benjamin Spence, 36. Apparently Spence has a restraining order against him that prohibits him from having any contact with Dana Depetro.

Harassment of disabled in hertfordshire

2011-06-12T03:15:00.000-07:00

in these times of so called disability awareness why i wonder in hertfordshire are some being targeted to be harassed by the police.The very people who are apparently their to assist and help all including the vulnerable.

The police forces of herts beds and bucks apparently endorse an autism alert card and a booklet for their officers listing do s and don'ts of dealing with such a condition why is it that i know of one young male who has been routinely stopped searched taunted and all his tablets removed from his pockets and wrappers in the name of 'fun' one can only presume.

When the said young male is taken out by his brother (his carer) in the evenings for a drive as his condition makes it difficult to meet people and at these times it is less likely that this will happen,his brother is pulled over ,both are searched (people with aspergers do not like to be touched)the car is searched and both lads are accused of anything from stealing ,attempted burglary speeding (although no fines ever given.This happened twice in one evening the officers said if we see you out driving again we will stop you lo and behold next day they did.

This is the same police force who when a young woman came to them saying she was being harassed by her ex boyfriend and feared for her life did nothing 2 days later she was dead maybe they should stop picking on the easy targets and do what they are supposed to do POLICE.

A mothers perspective

Autism Act: frequently asked questions

2009-11-02T16:05:00.000-08:00

What does the Autism Act do?

The Act puts a duty on the Secretary of State for Health to introduce a strategy for improving outcomes for adults with autism. This will be the first ever strategy for adults with autism and will cover a wide variety of issues including health, social care, employment and training.

Crucially, the Act also puts a duty on the Secretary of State for Health to introduce statutory guidance for local authorities and Primary Care Trusts, to accompany the strategy.
This means that there will be a legal obligation on these bodies to do certain things within the strategy.

The Autism Act sets in stone some of the areas that must be covered by the guidance. These are:
a) providing services for diagnosing autism in adults;

b) identifying adults with autism; c) carrying out needs assessments for adults with autism; d) planning appropriate services to young people with autism as they move from
children’s to adult services; e) local planning to provide appropriate services to adults with autism; f) training of staff who provide services to adults with autism; g) local leadership with regard to providing services to adults with autism.
So essentially, the Act introduces an adult autism strategy, and adds legal force to that strategy, putting new statutory duties on local bodies with the aim of improving outcomes for adults with autism.

When will the strategy and the guidance be published?
The Act commands that the strategy must be published no later than April 2010. The accompanying guidance must be published no later than December 2010.

What will the adult autism strategy say?
We cannot yet say with any certainty exactly what the adult autism strategy will say. The strategy went out for consultation over the summer of 2009. The consultation closed on 15th September 2009 and the Government received over 1,000 responses.
To read the National Autistic Society’s response and a summary of our key demands, click here.
The Department of Health are currently analysing the responses to the consultation and drafting the strategy. The NAS are involved in ongoing discussions with the Government over the content of the strategy.

Simultaneously, an External Reference Group of stakeholders, including adults with autism, parents, carers, experts and professionals, has also written a response to the consultation.
The group is chaired by Mark Lever, chief executive of the NAS, and is also in ongoing discussions with the Government regarding the strategy.
The content of the strategy is absolutely crucial to the success of the Bill. For this reason, we are working extremely hard to ensure that the Government drafts a strategy which will really achieve real and lasting improvements for adults with autism.

What will the statutory guidance say?
The statutory guidance will also be consulted upon at some time in 2010, at which point its content will be decided upon. The National Autistic Society has already proposed our vision for the statutory guidance, which you can find on page 26 of our strategy consultation response.
In the above section, entitled What does the Autism Act do?, you can see a list of all of the things that the statutory guidance will have to cover, from diagnosis and care assessments, to staff training and local leadership.

What the guidance will actually say in covering these issues is still open for negotiation. But whatever it does say will have legal force, so local authorities or Primary Care Trusts who do not comply can be challenged in court.

Why is the Autism Act for adults and transition only?
When the Autism Bill was first introduced, it was drafted to improve provision for both adults and children. However, following strong commitments from Ministers, regarding the data collection and provision for children with autism, we were happy for the clauses relating to children to be removed.

The Government has committed to amending the Children and Young People’s Plans (CYPPs), which are the key strategic planning tool for local authorities, as the Bill had suggested.

Through a different Bill, called the Apprenticeship, Children, Skills and Learners Bill, the Government will place a new legal duty to ensure that local areas collate and share data on disabled children as part of their CYPP needs assessments and include children with autism in their plans for children's services. Ministers also made a commitment that the statutory guidance that accompanies these duties will state that autism must be specified as a specific category on these registers.

For this reason, we were happy for the children’s elements of the Autism Act to be removed, as we were satisfied that they were being met in other ways.
What nations does the Autism Act cover?
The Autism Act is an England only legislation. However, there are policy initiatives taking place in the other UK nations including the ASD Action Plan in Wales and an Autism Bill in Northern Ireland.

What does the Autism Act mean for me, as an adult with autism, a parent or a carer?
The passing of the Autism Act will not mean immediate improvements for you as an adult with autism, a parent or a carer. As explained above, the Act serves to ensure that no matter what the outcome of the General Election, an adult autism strategy and statutory guidance will be published in 2010. You will begin to notice the effects of the legislation once the strategy and guidance have been introduced.

We are working hard and are determined to ensure that we get the best possible strategy and guidance, which will make a huge difference to the way in which services for adults with autism are delivered at a local level.

Once the strategy and guidance are published, local bodies will have new duties placed upon them to improve their autism services for adults with autism in various ways (outlined above). Local bodies who do not comply will be breaking the law and will therefore be able to be legally challenged.

It is important to point out, however, that the Autism Act does not give you new rights. Your right to have a diagnosis, an assessment or a service will not be changed by the Act. Instead, the law will work by giving new duties to the bodies that provide these services, thus ensuring that such services will be available to adults with autism.

Sandie

2009-10-24T20:35:00.001-07:00

2009-10-19T18:43:00.000-07:00

The Guys

2009-10-19T07:41:00.000-07:00

Social care reform and the future of disability benefits

2009-09-30T17:09:00.000-07:00

The Government's Green Paper on social care reform, published last month, mentions the possibility of moving some disability benefits from being a cash benefit and incorporating it into social care funding, administered on a person's behalf by a local authority.

The NAS will be responding to the Green Paper. We will produce a summary of how the Green Paper proposals could affect people with autism.

Tell us what you think about the Green Paper proposals

We want to know what you think of the possibility of Disability Living Allowance (DLA) being integrated into social care funding. This will inform our official response to the Government.

To let us know your thoughts, email policy@nas.org.uk

What we think

DLA in its current form, or elements of it, is a crucial benefit for many people with autism and their families. Integrating DLA into local authority social care funding would have a profound effect on those people. We have serious concerns about the possibility of such a policy being introduced.

Many people with autism and their families rely on the money they receive from DLA, and to abolish DLA in its current form would have disastrous consequences for these groups. DLA is a non-means-tested, cash benefit, with no restrictions on use, introduced to help disabled people to cover the additional costs incurred by having a disability. Those additional costs still exist. The Green Paper does not make clear how people with disabilities would be expected to cover costs under an alternative system.

We also have concerns that people with autism and their families who have traditionally struggled to access local authority support would have similar problems accessing any new support paid for with DLA, but at the discretion of the local authority. We could experience a 'postcode lottery' based on local decision-making, and are concerned that some people with autism would miss out.

Furthermore, integrating DLA into local authority funding seems contrary to the Government's personalisation agenda, as it would be taking control over spending away from individuals.

The other side of the argument is that some people who receive Attendance Allowance and DLA are already financially well off. In an environment in which local authorities are cash-strapped and using eligibility criteria to provide care to only those with the very highest support needs, perhaps this money could be better spent on making sure that lower-level services are available to those who need them?

Further information

Here are some points to consider:

This is a Green Paper at present. This means that it is a proposal by the Government which will be consulted upon and debated. It is not legislation. The consultation period runs until mid-November 2009. At the NAS, we understand that the way the Green Paper has been reported on some websites may lead people to assume that after the consultation period, their DLA will stop. This is not the case. If you get DLA or Attendance Allowance at the moment, we would seek to reassure you that there is no immediate threat to your entitlement within, or at the end of, the consultation period. Any changes, if any are made at all, could take years to come into force.
The Green Paper refers to 'disability benefits'. This is often taken as referring to Attendance Allowance and the care component of DLA (the mobility component is usually left out of this definition). The focus of the Green Paper though, is far more on Attendance Allowance than DLA. The inclusion of DLA is hinted at rather than made explicit, but we will monitor the situation closely to establish any proposed changes to DLA.
The Green Paper consultation ends in November 2009, and will be followed by a White Paper before it can begin the legislative process. Therefore, there is very little chance that we will see legislation before the next general election. A new government formed after the election may have different ideas.
There is currently no legislation, or even guidance, about what DLA or AA should be spent on. It would, therefore, be a major U-turn by the Government if they were to stop DLA and Attendance Allowance being cash benefits. If Government attempted to make this change, it would undoubtedly face strong opposition from individuals, organisations, and some politicians. It could also be challenged in the higher courts, quite possibly the European courts.
The Green Paper mentions protection for existing DLA/Attendance Allowance recipients and this is a characteristic of benefit changes. 'Transitional protection' is quite common and means that if a benefit is amended or phased out, existing recipients of that benefit retain their entitlement to it. Again, though, this is something we will monitor closely.

Apply for an e-befriender today

2009-09-26T07:53:00.001-07:00

If you or a member of your family has autism or Asperger syndrome, an e-befriender can provide you with regular online support and social contact.

Our e-befrienders exchange emails with you or another member of your family, chatting about things that interest or concern you and offering a friendly, supportive link with the wider community.

We take the time to match you with an e-befriender you have something in common with.

Apply for an e-befriender

Applying for an e-befriender is easy. Email e-befriending@nas.org.uk and we'll send you an application form by post or email. Please tell us your full name and address if you want to receive the application form by post. We can guide you through your application over the phone if you need us to.

Our e-befriending service is web-based, so you will need to be able to use the internet to make contact with your e-befriender. You can live anywhere in the UK as all correspondence is online.

Once you have completed an application form, we will send you a link to our e-befriending site where you can register your details, choosing your own username and password.

Befriending

2009-09-26T07:50:00.000-07:00

Who can have a befriender?

"Having a befriender has been brilliant. I get a chance to spend time with my other children, as well as a chance to get a precious few hours to myself."

Anyone who is affected by autism or Asperger syndrome can apply to have a befriender:

adults and children with an autism spectrum disorder
siblings
mothers and fathers.

Although we cannot guarantee to find a befriender for everyone, if there is a scheme in your area we will do our best to match you with the right volunteer.

How does befriending work?

The National Autistic Society (NAS) recruits and trains volunteers to support people with autism or Asperger syndrome and their families. The volunteers are not experts, but they are friendly people who are willing to learn and who would like to do something to help.

If you have a befriender, the NAS will pay for the volunteer to travel to your home or wherever you decide to meet. Any other expenses are normally met by the family.

"It is such a relief to us that she has someone understanding who is more of her own age to talk to."

"His befriender is like a big brother to him, and they do fun things together that a teenager doesn't want to do with his mum."

What do befrienders do?

Befrienders spend a few hours a week with a person with autism or Asperger syndrome or their families. We match volunteers with people and their families who have something in common. A befriender might:

be an extra pair of hands on a shopping trip
take a child out to the park or for a walk
go along with a teenager to a youth club or aerobics class
meet up with an adult for lunch or to go and see a film
spend time listening and talking to a member of the family
offer the family a short break by spending time with a child in the home.

"I find I can relax and enjoy myself knowing that Amy is having fun with an understanding, responsible adult who is just for her."

Aspie Affection a Asperger's Syndrome dating website

2009-09-14T05:38:00.000-07:00

http://www.aspieaffection.com/

ADAM - Theatrical Trailer

2009-09-10T07:48:00.000-07:00

A Free Asperger's Syndrome Social Network

2009-09-10T07:37:00.000-07:00

A Free Asperger's Syndrome Social Network http://aspergerssyndrome.socialgo.com/home.html

The Uk Hates Autistic People

2009-09-10T07:34:00.001-07:00

i have autism and ever since my social worker informed the police i have been hounded and harrassed , Is autism a crime ?

Mozart and The Whale Trailer

2009-09-10T07:32:00.000-07:00

Did my ex have Asperger's? How Karen realised the terrible dress sense and penchant for air guitar weren't just eccentric

2009-08-23T18:11:00.000-07:00

Last updated at 10:17 PM on 23rd August 2009

The movie Adam is a romantic comedy about a man diagnosed with Asperger's Syndrome - a form of high-functioning autism. He is a bright, childlike and highly focused young man. However, he cannot understand emotions.

Adam takes words literally. He is socially awkward, easily disturbed and misunderstands figures of speech, intonation and body language. His behaviour is often inappropriate.

Newly divorced from someone who was emotionally detached, inflexible and successful, watching this film immediately rang bells.

Hindsight: Karen Krizanovich believes her emotionally detached but successful ex-husband had Asperger's Syndrome

Afterwards, I was desperate to read more about Asperger's Syndrome and devoured a copy of Barbara Jacobs's book, Loving Mr Spock, (Penguin Books, £7.99).

It made me realise that I may indeed have been married to a man with Asperger's, someone who suffers a wide spectrum of autistic traits ranging from alluring to hurtful.

Jacobs's book was an eye-opener and not without caution: 'Many behaviours of the " typical bloke" have some similarities with Asperger's Syndrome,' she writes in her preface, 'and the condition can't be attributed to every oddball you may meet, of whatever gender.'

My marriage was great until I hit an all-time low with simultaneous work setbacks and a miscarriage. Naturally, I turned to my husband for emotional support. It was as if he didn't know what to do and couldn't be bothered to try.

Being the high earner, as a journalist, commentator and broadcaster, when we first married, I felt ashamed that I couldn't pull myself together and get back to being worker, woman and wife.

Me, I was always invincible. Now I pivoted between feeling a failure and thinking my problems were too much to foist on my husband, to feeling angry that he acted like a total jerk.

Of course, you certainly don't need to have Asperger's Syndrome to be awkward or a right old swine. This was a difficult time for both of us. From my standpoint, his lack of empathy, however, floored me. My years as an agony aunt didn't prepare me for this.

Either I was being a difficult woman married to a man who was doing his best, being 'a bloke', or I was in a bad situation expecting the impossible from a man who couldn't do better.

Hans Asperger, the doctor after whom the syndrome is named, once said autism is 'an extreme variant of male intelligence'. And strangely, AS does affect four times as many men as woman.

'I turned to my husband for emotional support after a miscarriage. It was as if he didn't know what to do and couldn't be bothered to try.'

Accordingto the academic, Joad Raymond, who is researching a book on Asperger's within the family, determining AS pivots on three main categories.

'People with AS have problems with social interaction - they often lack empathy, have difficulties picking up social cues. They are often poor at non-verbal communication. They are also often inflexible and have a need for routine.'

These so-called 'extreme male traits' include egotism, blunt speech, a need for 'space' and a fear of confrontation.

Of the 60 indicators of AS pointed out in Jacobs's book, my spouse had more than half. Some were things you'd expect from anyone, such as a bad dress sense and difficulty holding eye contact or staring. Others were more puzzling, such as his 'stim', a term for a self-stimulating, repetitive movement.

Playing the air guitar may seem harmless, but my husband would do it anywhere, any time - in the car, at a formal dinner party where there was no music, while I was trying to talk to him.

It was funny at first, but soon I saw that he didn't have control over his 'stimming'. He seemed lost in another world. I learnt to ignore it but it still seemed weird and childish. (Another woman I spoke to who is married to an AS man told me her husband pretends to swing a baseball bat when he feels uncomfortable: she hadn't thought it was odd at all.)

To make sure I wasn't jumping to conclusions, I contacted New York-based Rudy Simone who counsels AS people and their partners. The author of 22 Things A Woman Must Know If She Loves A Man with Asperger's Syndrome (Jessica Kingsley Publishers, £9.99) she also runs www.help4aspergers.com.

'Knowledge of AS, if one partner has it, is usually crucial to the success of the relationship. Otherwise, there is no frame of reference for understanding the Aspergian partner,' says Simone.

'Also, it is crucial for the person with AS to understand why their behaviour may be "jarring" or unsatisfying to the non-autistic partner.'

Understanding my ex's discomfort was something of which I was well aware. He no longer came to my parents for Christmas because he was so ill-at-ease. He seemed bored with my friends. He also seemed bored with me.

Learning curve: Rose Byrne and Hugh Dancy in the film Adam

This is something every couple goes through as part of a phase of the relationship, but it was hard to pull together as a team. There's an old saying that goes, 'there are three sides to every story. Yours, mine and the truth'.

But I do believe if I had been aware of even the possibility that my husband had some autistic traits, perhaps I could have been a better wife. Maybe I would have understood his inability to help me instead of feeling increasingly unwelcome in my own marriage.

Maybe I could have made allowances for what I saw as a lack of care and love. Maybe not: it seemed I didn't count for much unless I was independent, untroubled and nurturing towards him and his career. What struck me was that if I was in this situation, other women must be, too.

If your partner is a bit 'odd', it doesn't mean he is on the autistic spectrum.

'Normal' is a loaded word and not everyone with autistic traits is autistic. That said, the autism spectrum affects up to one in 64 people - and far more if broader autistic traits are included.

Only relatively recently recognised as a condition, a whole generation of people with Asperger's (diagnosed or otherwise) are now heading into relationships - possibly with non-AS partners.

'People with Asperger's do have feelings, do crave love, acceptance and companionship at least some of the time,' says Simone, who is herself AS. 'We can make fantastic partners and parents. Self-awareness and awareness of AS is crucial if an autistic person and a non-autistic person are in a relationship together.

'Each will have a different way of looking at the world, communicating, and a different set of needs and expectations. There must also be compromise.'

AS partners seem unable to be emotionally present. They may want to be loved when and how it suits them. Or they may dislike physical attention, such as cuddling or touching.

They like attention in general and can be quite self-centred (my ex loved listening to himself on the radio). They may also be wonderful, entertaining friends, if they are in situations where they are experts - music, statistics or anything that requires obsessive knowledge.

Strange aversions to food textures, bloody-mindedness, innocence and vulnerability, tantrums, clumsiness, an odd walk, inappropriate emotional responses, impulsive actions, lack of common sense, a tendency to collect objects - all of these can point collectively to someone with AS.

'Playing the air guitar may seem harmless, but my husband did it at a formal dinner party where there was no music'

The causes of AS are unknown but are thought to be largely genetic. Although not the best at understanding people or social situations with aplomb, they have average or above average intelligence and a heightened ability to prioritise the physical world.

Those affected are often talented, highly focused and respected in their fields. Einstein, Mark Twain and Mozart have all been cited as possessing Asperger traits.

Few men would jump at the chance to be diagnosed as AS. My ex had no interest in being clinically diagnosed, although he calmly admits that he probably is AS.

Being diagnosed may not be helpful, especially if a positive diagnosis is used as a defence or excuse for hurtful behaviour. Not every AS person has the ability to recognise where they are causing problems for their partner.

Joad Raymond suggests that women who think their men may be AS should ask whether, 'the bundle of traits are characteristic of masculinity, and, if so, if they interact in a similar way in AS as in men more generally.'

In short, AS is a matter of degrees: the more traits a person shows, the more likely an awareness of AS could be useful to his partner and himself - if he is capable of caring about the relationship.

A man who is uncaring or eccentric isn't autistic; many autistic people have successful relationships through compromise, love and understanding.

In my case, however, knowledge of Asperger's traits would have helped me to know my own limitations as well as those within the relationship.

Like the non-autistic girlfriend in the film, I would have seen more clearly if the relationship was good for us or just him.

I would have made better decisions, knowing that, as Jacobs writes, AS people 'can't switch between being pragmatic and being over-emotional'.

My problems would have made more sense. As it was, our marriage ended after seven years, with great sadness. I wish it could have been different. In one way, a relationship between individuals with Asperger's Syndrome and those without is just the same as any relationship.

You just have to know what you are dealing with. Otherwise, lacking love, understanding and compromise on both sides, it will be tears before bedtime.

Home - Asperger's Syndrome

2009-07-19T18:54:00.001-07:00

Home - Asperger's Syndrome

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David Cameron attacks the spineless Labour MPs who deserted Gary McKinnon

2009-07-16T20:38:00.000-07:00

Last updated at 12:42 AM on 17th July 2009

David Cameron and Nick Clegg last night attacked hypocritical MPs who pledged support for Gary McKinnon's fight against extradition to the U.S. before reneging in a key Commons vote.

It came as the Asperger's sufferer's family and charities lashed out at former minister Denis MacShane for suggesting he was faking his condition.

Mr McKinnon's legal team, supported by a Daily Mail campaign, has argued that his mental state is so severe that he could commit suicide if he is extradited on computer hacking charges. He faces 60 years in jail if convicted.

Lashing out: David Cameron, along with Lib Dems leader Nick Clegg attacked Labour MPs who reneged their support for Gary McKinnon, while Denis MacShane (right) claimed the computer hacker was faking his condition

Mr Clegg said: 'Gordon Brown's leadership now only extends to driving his party into complete moral bankruptcy.

'Gary McKinnon is paying the price for the spinelessness of Labour MPs.'

Mr Cameron said he did not believe Britain's extradition proceedings were set up to apply to cases like Mr McKinnon's.

Fragile: Doctors warn Gary McKinnon could commit suicide if he was extradited to the U.S.

'It should still mean something to be a British citizen - with the full protection of the British Parliament, rather than a British Government trying to send you off to a foreign court', he said.

'I am disappointed that some of the Members of Parliament who signed up to do something about this did not follow through when it came to the vote.'

On Wednesday, 74 Labour MPs who signed written motions backing Mr McKinnon or demanding a review of extradition agreements with the U.S. failed to oppose the party line.

A demand to review the Extradition Act 2003 was defeated by 290 votes to 236.

Mr McKinnon, 43, is accused of hacking into Pentagon and Nasa computers looking for the existence of aliens.

Mr MacShane came under fire for likening Mr McKinnon's case to that of Ernest Saunders, one of the 'Guinness Four' jailed after a massive City fraud trial.

During Wednesday's debate he said: 'He (Saunders) said he was suffering from Alzheimer's to get off criminal prosecution and the moment he was out of court somehow he skipped off and his memory was back with very marvellous vigour.'

In fact, the ex-Guinness chairman was freed early from jail when doctors diagnosed him as suffering from the disease.

Mr McKinnon's mother accused Mr MacShane of 'gutter' tactics. Janis Sharp said: 'It was an absolutely awful, cheap shot. It is a horrendous suggestion. It also shows his ignorance.'

The Best Thing You Can give Your Son or Daughter with Aspergers is some B.A.L.L.S.

2009-07-14T20:50:00.001-07:00

Asperger's in the workplace

2009-07-14T20:48:00.001-07:00

Local councils 'failing young people with autism'

2009-07-05T12:17:00.000-07:00

Lack of support can lead to mental health problems, says report

Tuesday 9 June 2009 09.43
Article history
Local councils are failing young people with autism by not providing adequate support to help with the transition from school to adult life, leaving many vulnerable and in some cases with mental health problems, a report published today claims.

An inquiry by the All Party Parliamentary Group on Autism (Appga) concludes that there is a lack of co-operation between the bodies responsible for planning transition arrangements for young people, such as local councils and education authorities. The result is a "nightmare process" that means families and individuals have to deal with multiple agencies, and that no single agency accepts overall responsiblity.

"This inquiry has shown that for many young people with autism, transition is not working," the committee said. "Many young people with autism often find that planning for their futures does not happen."

The findings come close on the heels of a National Audit Office report that said many local authorities and NHS trusts were unaware of the numbers of people with autism in their areas, meaning too many people were falling through gaps in the system.

Today's report concludes that more needs to be done to inform families and young people of services available. It also recommends that professionals involved in helping young people make the transition out of education are better trained to understand the condition.

A spokesman for the National Autistic Society (NAS) said: "The Appga report concludes that for many young people with autism, transition is not working, and that the failure of local authorities and health and education services to provide the right help at a crucial stage in their lives has serious repercussions for individuals, their families, and public expenditure.

He added: "Without effective planning and joint working between children's and adult social services, on leaving school, many young people with autism find themselves isolated, unable to find employment and entirely dependent on their families for support. As a result, many experience mental health problems."

The NAS said it was vital for the government to heed the recommendations in today's report and it should include them in the forthcoming autism strategy.

The report, which follows a consultation with 220 individuals and organisations, recommends that directors of children's services keep a database of children in their areas with autism. It also calls for local government to ensure that individual needs are properly assessed and suggests that a key worker be appointed to steward young people through the transition process.

Anya visited Westminster to meet Phil Hope MP, Minister for Care Services

2009-06-25T17:52:00.000-07:00

What's it like to have autism or Asperger syndrome?

2009-06-01T15:12:00.001-07:00

Autism: a spectrum of conditions

Before finding out what it's like to have an autism spectrum disorder (ASD), it's important to understand that all these terms carry a very wide variety of meanings, so it's hard to generalise about the experience of living with it day to day. This page is intended as a rough guide for 'neurotypicals' (people who don't have autism or Asperger syndrome).

Autism is called a 'spectrum' disorder. This means an individual may present a wide range of difficulties from mild to acute. Furthermore, these difficulties can very widely from one individual to another. Difficulties may also vary for an individual person on a daily basis so that they may be more or less sensitive to particular things on different days.

Asperger syndrome (AS) is a form of autism used to describe people at the higher functioning end of the spectrum. People with AS do not usually have the accompanying learning disabilities associated with autism and their language skills are highly developed. However, they still have difficulty understanding language and communication. At the lower functioning end of the spectrum is Kanner syndrome, sometimes referred to as 'classic autism'.

So what's it like to have an ASD?

Autism is a lifelong developmental disability that affects social and communication skills. People with an ASD may find it difficult to understand how the world and people around them operate and also find it hard to interact. In particular, people with an ASD may have trouble learning, understanding and interpreting the unwritten rules of social interaction and relationships that most people without an ASD can take for granted.

Reality to an autistic person is a confusing mass of events, people,
places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the pattern behind everything.

A person with autism

Social interaction and communication are key aspects of our daily lives and
they determine our ability to fit in and function in society.

Try to imagine if you suddenly woke up in a foreign country where you did not speak the language and had no way of effectively communicating with the people around you. On top of this, imagine how it would be if the people around you had a different set of social rules (such as the way they greet one another when meeting), which you could not work out.

How would you feel? How would you react? How would you cope?

To varying degrees, this is how people with an ASD experience their
surroundings every day and their initial responses are often to find unique
ways of understanding and coping with the situations in which they find
themselves. This is why they may behave and act in ways that may appear
odd or even mischievous, and these reactions may effectively isolate the
individual from the world even more.

Autism is not a physical disability, so the condition can be invisible to the rest of the world. It is easy to tell that a person in a wheelchair has a physical disability that may require support and understanding, whereas people with an autism spectrum disorder look just like anybody without a disability. This means it can be extremely difficult to raise awareness and foster an understanding of the condition.

In particular, children with an ASD are often mistakenly described as being
naughty and other people assume that the parents are simply not controlling their child properly.

Approximately 70% of all people with autism (excluding other autism spectrum disorders such as Asperger syndrome) may also have accompanying learning difficulties (Fombonne, 2005). People with Asperger syndrome commonly have average or above average intelligence (Wing, 1996). Whatever their level of ability, people with an ASD share a common difficulty in making sense of the world.

Asperger syndrome?

2009-06-01T15:04:00.000-07:00

As soon as we meet a person we make judgements about them. From their facial expression, tone of voice and body language we can usually tell whether they are happy, angry or sad and respond accordingly.

People with Asperger syndrome can find it harder to read the signals that most of us take for granted. This means they find it more difficult to communicate and interact with others which can lead to high levels of anxiety and confusion.

Here, we explain more about what Asperger syndrome is.

What is Asperger syndrome?

Asperger syndrome is a form of autism, which is a lifelong disability that affects how a person makes sense of the world, processes information and relates to other people. Autism is often described as a 'spectrum disorder' because the condition affects people in many different ways and to varying degrees. (For more information about autism, please read our leaflet What is autism?)

Asperger syndrome is mostly a 'hidden disability'. This means that you can't tell that someone has the condition from their outward appearance. People with the condition have difficulties in three main areas. They are:

social communication
social interaction
social imagination.

They are often referred to as 'the triad of impairments' and are explained in more detail below.

While there are similarities with autism, people with Asperger syndrome have fewer problems with speaking and are often of average, or above average, intelligence. They do not usually have the accompanying learning disabilities associated with autism, but they may have specific learning difficulties. These may include dyslexia and dyspraxia or other conditions such as attention deficit hyperactivity disorder (ADHD) and epilepsy.

With the right support and encouragement, people with Asperger syndrome can lead full and independent lives.

What are the characteristics of Asperger syndrome?

The characteristics of Asperger syndrome vary from one person to another but are generally divided into three main groups.

Difficulty with social communication

"If you have Asperger syndrome, understanding conversation is like trying to understand a foreign language."

People with Asperger syndrome sometimes find it difficult to express themselves emotionally and socially. For example, they may:

have difficulty understanding gestures, facial expressions or tone of voice
have difficulty knowing when to start or end a conversation and choosing topics to talk about
use complex words and phrases but may not fully understand what they mean
be very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm. For example, a person with Asperger syndrome may be confused by the phrase 'That's cool' when people use it to say something is good.

In order to help a person with Asperger syndrome understand you, keep your sentences short - be clear and concise.

Difficulty with social interaction

"I have difficulty picking up social cues, and difficulty in knowing what to do when I get things wrong."

Many people with Asperger syndrome want to be sociable but have difficulty with initiating and sustaining social relationships, which can make them very anxious. People with the condition may:

struggle to make and maintain friendships
not understand the unwritten 'social rules' that most of us pick up without thinking. For example, they may stand too close to another person, or start an inappropriate topic of conversation
find other people unpredictable and confusing
become withdrawn and seem uninterested in other people, appearing almost aloof
behave in what may seem an inappropriate manner.

Difficulty with social imagination

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

People with Asperger syndrome can be imaginative in the conventional use of the word. For example, many are accomplished writers, artists and musicians. But people with Asperger syndrome can have difficulty with social imagination. This can include:

imagining alternative outcomes to situations and finding it hard to predict what will happen next
understanding or interpreting other peoples thoughts, feelings or actions. The subtle messages that are put across by facial expression and body language are often missed
having a limited range of imaginative activities, which can be pursued rigidly and repetitively eg lining up toys or collecting and organising things related to his or her interest.

Some children with Asperger syndrome may find it difficult to play 'let's pretend' games or prefer subjects rooted in logic and systems, such as mathematics.

Other related characteristics

Love of routines

"If I get anxious I get in a tizz. I have a timetable; it helps me to see what I have to do next, otherwise I get confused."

To try and make the world less confusing, people with Asperger syndrome may have rules and rituals (ways of doing things) which they insist upon. Young children, for example, may insist on always walking the same way to school. In class, they may get upset if there is a sudden change to the timetable. People with Asperger syndrome often prefer to order their day to a set pattern. For example, if they work set hours, an unexpected delay to their journey to or from work can make them anxious or upset.

Special interests

"I remember Samuel reciting the distances of all the planets from the sun to a baffled classmate in the playground when he was five. Since then he has had many obsessions, which he loves to talk about at length!"

People with Asperger syndrome may develop an intense, sometimes obsessive, interest in a hobby or collecting. Sometimes these interests are lifelong; in other cases, one interest is replaced by an unconnected interest. For example, a person with Asperger syndrome may focus on learning all there is to know about trains or computers. Some are exceptionally knowledgeable in their chosen field of interest. With encouragement, interests and skills can be developed so that people with Asperger syndrome can study or work in their favourite subjects.

Sensory difficulties

"Robert only has problems with touch when he doesn't know what's coming - like jostling in queues and people accidentally brushing into him. Light touch seems to be worse for him than a firm touch."

People with Asperger syndrome may have sensory difficulties. These can occur in one or all of the senses (sight, sound, smell, touch, or taste). The degree of difficulty varies from one individual to another. Most commonly, an individual's senses are either intensified (over-sensitive) or underdeveloped (under-sensitive). For example, bright lights, loud noises, overpowering smells, particular food textures and the feeling of certain materials can be a cause of anxiety and pain for people with Asperger syndrome.

People with sensory sensitivity may also find it harder to use their body awareness system. This system tells us where our bodies are, so for those with reduced body awareness, it can be harder to navigate rooms avoiding obstructions, stand at an appropriate distance from other people and carry out 'fine motor' tasks such as tying shoelaces. Some people with Asperger syndrome may rock or spin to help with balance and posture or to help them deal with stress.

Who is affected by Asperger syndrome?

There are over half a milion people in the UK with an autism spectrum disorder - that's around 1 in 100. People with Asperger syndrome come from all nationalities, cultures, social backgrounds and religions. However, the condition appears to be more common in males than females; the reason for this is unknown.

What causes Asperger syndrome?

The exact cause of Asperger syndrome is still being investigated. However, research suggests that a combination of factors - genetic and environmental - may account for changes in brain development.

Asperger syndrome is not caused by a person's upbringing, their social circumstances and is not the fault of the individual with the condition.

Is there a cure?

There is currently no cure and no specific treatment for Asperger syndrome. Children with Asperger syndrome become adults with Asperger syndrome. However, as our understanding of the condition improves and services continue to develop, people with Asperger syndrome have more opportunity than ever of reaching their full potential.

There are many approaches, therapies and interventions, which can improve an individual's quality of life. These may include communication-based interventions, behavioural therapy and dietary changes. Information about many of these can be found on The National Autistic Society's website at: www.autism.org.uk/approaches

What is a diagnosis?

Because Asperger syndrome varies widely from person to person, making a diagnosis can be difficult. It is often diagnosed later in children than autism and sometimes difficulties may not be recognised and diagnosed until adulthood. The typical route for getting a diagnosis is to visit a GP. He or she can refer an individual to other health professionals who can make a formal diagnosis. Most frequently they will be psychiatrists or clinical psychologists and, in the case of children, paediatricians.

Some people see a formal diagnosis as an unhelpful label; however, for many a diagnosis:

helps the individual, families, friends, partners, carers, professionals and colleagues to better understand and manage their needs and behaviour
is the key needed to open the door to specialised support, eg supported living or finding suitable employment.

There are diagnostic differences between conditions on the autism spectrum. Sometimes people may receive a diagnosis of autism or autistic spectrum disorder (ASD), high-functioning autism (HFA) or atypical autism instead of Asperger syndrome. Alternatively, they may be given a diagnosis of pervasive developmental disorder - not otherwise specified (PDD-NOS) or semantic pragmatic disorder. However, people who have been given these diagnoses will have similar difficulties and similar support needs to those who have Asperger syndrome.