A new recommendation from NICE (the National Institute of Health and Clinical Excellence) seeks to improve autistic people’s experiences of GP services in England.
Research into autism as a symptom of other genetic disorders sheds some light on the molecular mechanisms behind the pervasive and elusive condition.
The video warns of loud, repetitive noises.
‘…………….By Ruth Wood
Ruth Wood meets the parents who only found out they were on the spectrum when their children were diagnosed.
When her youngest son was a baby, Lynne Watkins was afraid to look him in the eye. His intense gaze unnerved her. “It made me shudder and feel sick,” she says. A similar panic gripped her whenever she was approached by someone in sunglasses, as the lenses resembled big, staring eyes. When taking a bath, she would turn all the children’s toy ducks around so they weren’t looking at her.
Today, Ms Watkins knows her anxieties about eye contact are due to autism, a lifelong disability that affects how she relates to people and makes sense of the world. But until her diagnosis at 41, in 2001, she had no idea why some things were a struggle. Only after her children, Brynmor and Rhodri, were identified as autistic as pre-schoolers did she discover she had a mild version of their profound linguistic and social difficulties.
“The specialists kept going on about eye contact,” says the 54-year-old, who lives near Bristol. “They were also concerned Bryn didn’t play with other children and loved routines. I didn’t know what they were talking about. That behaviour sounded perfectly sensible to me.”
Greater awareness about autism is behind a boom in diagnosis rates, and it is now known to affect more than one in 100 people in the UK. The National Autistic Society believes Ms Watkins may be part of a wave of adults recognising autistic traits in themselves and seeking diagnosis following that of their child.
“This can be a milestone in their life,” says Carol Povey, the charity’s director of the Centre for Autism. “It provides an explanation for feeling ‘different’ after years of not understanding why they found some things difficult or thought differently from their peers. It’s also a gateway to identifying essential support.”
Autism is not a single condition but a spectrum of disorders, affecting people in various ways and to varying degrees. Characteristics include a love of routines, difficulty with social interaction, repetitive behaviours and sensory problems such as with noise or textures.
Ms Watkins’s sons are at the low-functioning end of the spectrum. Rhodri, 24, has never developed speech, has little understanding of the outside world and can lash out if distressed by a change to his routine or sensory overload. He has been in full-time residential care since he was 11. Bryn, 26, can construct basic sentences and has been to college but has minimal social skills. He lives semi-independently in his mother’s home. Their mother, by contrast, has Asperger Syndrome, a high-functioning form of autism. She too loves routines and patterns, hates crowded or unfamiliar places and struggles to make friends, but it didn’t stop her going to college, getting married (though she is now divorced), raising a family and running her own craft business.
Yet she feels a sense of missing out and longs for the friendship that comes from shared jokes and mutual understanding. And though she credits Asperger Syndrome for her honesty, amazing memory and organisation skills – her book My A-Z of Living with Autism and Asperger Syndrome is testament to these – she also blames it for her weaknesses.
Worst is the repetitive thinking she calls “tunnels of hell”. “If a friend dumps me or I’m in a stressful situation, my mind torturously repeats all the put-downs people have ever said to me. All these hurtful sentences come back and shout incessantly in my brain for 24 hours a day except for a few hours’ sleep. The only way I can stop them is to play my iPod at full volume,” she says.
Through talking to professionals and attending talks on how to better understand her autistic sons, it gradually dawned on Ms Watkins she understood them perfectly well already – because they were like her. And it wasn’t just their shared habit of avoiding eye contact.
“The boys used to have swimming lessons every Thursday,” she says. “If it was cancelled it was a big shock to them to be out of that routine. I knew exactly how they felt.” She also recognised their anxiety over unfamiliar places.
Eventually she confided in her GP she thought she might be autistic. Her GP asked if she did anything “odd”. “I said it was difficult to answer that because obviously I didn’t see myself as odd,” she laughs. She then asked to be referred to the consultant psychiatrist who had assessed her sons, and her diagnosis was confirmed. This was more a relief than a shock. “It’s as if I’m on a red road of life and I used to think everyone was on the red road. Then gradually I’ve discovered everyone else is on the blue road. It runs parallel but it’s not the same road. Now I know that, it’s easier for me. I talk more nowadays and feel more confident.”
Although studies suggest thousands of autistic women may be going undiagnosed because they are better at copying social norms, there is strong evidence that more males than females have an autism spectrum disorder. They are four times as likely to be diagnosed.
Former teacher Andrew Morrow, 48, got his diagnosis in 2013, two years after it emerged his son Michael, now 12, was autistic. His eldest daughter, Rebecca, 14, was diagnosed with a high-functioning form of autism a few months ago. Alarm bells began ringing when Mr Morrow’s wife, Linda, started reading up on autism and noticed the many personality traits shared by father and son, including their difficulty reading facial expressions and body language and aversion to loud noises and social situations. When she pointed these out to her husband, he thought back on his life and everything clicked into place.
“I’ve always struggled to understand what people are talking about,” he says. “I was happy to sit and listen but small talk makes no sense to me. It sounds terrible but I feel no emotional connection with other people. Joining conversations and recognising social cues are a nightmare.”
Fortunately, Linda is adept at guiding her husband and children through such minefields. “I can bore people to death about military history unless she stops me,” laughs Mr Morrow. “But I’m getting better, social-wise. I’m not as withdrawn as I was, and I spend time with people who know and accept me.”
But although relieved to have some explanation for his anxieties, he’s disappointed by the lack of support for autistic adults in the area south of Glasgow where he lives. There is no “cure” for autism; indeed many autism campaigners resent the implication they should conform to some “normal” ideal. Nor is there any single known cause, though some 400 genes and various environmental factors have been identified as influential.
“In the past it was seen as a childhood condition and I think that perception still persists,” says Ms Povey. “Many adults have been diagnosed with depression, anxiety, borderline personality disorders and drug or alcohol issues without recognition that autism lay at the root of their problems.”
Indeed, a third of adults have to wait three years or more for a diagnosis. Carl O’Keeffe, a photographer, is not surprised. After realising he felt some of the same disengagement, confusion and anxiety as his four-year-old autistic daughter, Robyn, he asked to be assessed about two years ago. Doctors agree he has Asperger Syndrome but have told him it’s not worth seeking a diagnosis because there is little support for autistic adults. “That’s not the point,” says the 41-year-old, who lives in Lancaster with his wife, Roxanne, Robyn and six-year-old Phoebe-Leigh. “A diagnosis is my right. Having Robyn has made me realise who I am.”
With autism directly touching the lives of some 2.8 million Britons – 700,000 adults and children plus their families – a societal shift in attitudes could be starting to emerge. Many theatres and cinemas have started offering autism-friendly performances, with reduced noise levels, fewer surprises, chill-out areas and a relaxed attitude to audience noise. And the National Autistic Society held its first ever autism-friendly rock concert in London at Christmas. For those like Ms Watkins who have spent a lifetime trying to fit into a neurotypical world, mutual understanding should work both ways.”In my own life, my home, work, with friends and with children, I can be autistic,” she says. “I can be myself.”
– Daily Telegraph UK ………….’
An unprecedented piece of research into the language used by autism communities to describe autism was released today.
The research by The National Autistic Society (NAS), the Royal College of GPs and the UCL Institute of Education looked at the preferences of people on the autism spectrum, their families, friends and professionals.
The findings confirmed that there is no single term that everyone prefers. However, they suggest a shift towards more positive and assertive language, particularly among autistic communities where autism is seen as integral to the person.
Survey responses from 3,470 people were analysed, including 502 autistic adults, 2,207 parents of children and adults on the autism spectrum, 1,109 professionals, and 380 extended family members and friends.
The research found that all groups like the terms ‘on the autism spectrum’ and ‘Asperger syndrome’. Autistic adults like the identity-first terms ‘autistic’ and ‘Aspie’, whereas families didn’t like ‘Aspie’. Professionals also like the term ‘autism spectrum disorder (ASD)’.
Some terms were strongly disliked or no longer used, particularly ‘low functioning’, ‘Kanner’s autism’ and ‘classic autism’.
The language we use is important because it embodies and can therefore help change attitudes towards autism. To reflect the findings of this research, the NAS will gradually increase the use of the term ‘autistic’ – particularly when talking about and to adults in that group. We will also use ‘on the autism spectrum’ as the default way of describing people on the autism spectrum.
The research shows that language preferences are evolving, and we will continue to research and test how different groups prefer to speak about autism.
- Read the abstract or full research paper ‘Which terms should be used to describe autism? Perspectives from the UK autism community’ in Autism: The International Journal of Research and Practice.
- Listen to a podcast of NAS Director of the Centre for Autism Carol Povey and Researcher Lorcan Kenny explaining the research.
- Want to share your thoughts? Find us on Facebook orTwitter using the hashtag #describeautism.
- Join our mailing lists to stay informed about our work, future research, events and other activity. ……..
World Autism Awareness Week (WAAW) is all about doing something to stand out for autism!
This week, you can raise funds to support people with autism to live the lives they choose, spread the word about autism, and have a fantastic time!
The money you raise will make a huge difference. By standing out and raising funds during WAAW, you could help The National Autistic Society deliver vital services to support over 700,000 people with autism and their families across the UK.
Get involved in WAAW
There are loads of ways that you could get involved. You could:
- celebrate WAAW in your school
- get cooking with the pink and purple bake-off
- have an unforgettable Onesie Wednesday™
- take part in our Night Walks for Autism.
Daryl Hannah has been open about her autism. (World Travel and Tourism, CC BY )
Decades ago I found myself working with a young woman with autism. I had done my reading of the autism texts of the time, and was singularly surprised when nothing I had read matched up to the person I was sat next to. There was no flapping, she had no interest in my earrings or buttons, and she certainly wasn’t even lining anything up.
We know so much more about autism now but the idea that all people with autism are disordered, impaired, or somehow “lesser” is one that still needs to be challenged. Having worked closely with people with autism for more than 20 years, I have had the pleasure of meeting many hugely intelligent, insightful, kind, caring, loyal, skilled autistic individuals, including two of my best doctoral students who both graduated successfully and are now prominent in their respective fields.
Some of the strongest marriages I have encountered are between people with autism, and I have also met multi-millionaire entrepreneurs who have been identified as autistic.
Identifying Not Diagnosing
So, the question remains, why is it that autism continues to be seen as a disorder, with terms such as “impaired functioning” still so rife within the literature and current diagnostic manuals? Why is it that one needs to present as a “problem” before being in a position to be identified as autistic? Even the term “diagnosis” brings along its own associations with “illness” or “disease”. Surely, this gives out the wrong message to all involved – parents, individuals, and the public.
For years I have been suggesting “identification” as a more appropriate term, which counters the pejorative language so often heard in reference to autism.
Without doubt being autistic in a world populated in the main by people who are not can cause huge issues for the individual and their family. But this is not the same as suggesting that the problems are caused by being autistic. The very fact that there are plenty of autistic individuals who are hugely successful demonstrates that being autistic does not preclude anything at all. Actors Dan Ackroyd and Daryl Hannah, and singer Courtney Love are to name but a few, while others have retrospectively identified other potential big names such as Stanley Kubrick.
Some research has shown poor outcomes for people with autism but there have been fewer evaluations using real-world measures such as employability, self-sufficiency and social support. Some of the ways we measure ability may also be problematic – take memory and learning, for example. The task support hypothesis – the idea that situations can be created for individuals with autism that capitalise on their areas of strength – can lead to situations where the ability to remember is increased.
The sad fact is that there are still schools of thought that deny the fact that people with autism can lead very successful lives; comments such as “she will never be able to have children”, or “he will never go to university” are still way too prevalent. Parents of newly identified children are still sometimes told what the future will hold, despite the fact that no one has a crystal ball. Perhaps many of the problems stem from being in a poorly understood minority group, rather than directly from being autistic?
(AP Photo/Scott Heppell, File)
Nonetheless, things are changing for the better – however slowly. The National Autistic Society, for example, promotes employment for people with autism. The Equality and Human Rights Commission is working to ensure a level playing field in the workplace, although there is some way to go before this is fully realised.
At the Autism Centre at Sheffield Hallam University we’ve been working to further these initial advances; to continue to promote a more accepting view of autism and to encourage society to recognise the potential of autistic individuals. One of the courses we run in collaboration with the National Autistic Society has welcomed a plethora of autistic speakers, guest lecturers and autistic students who share insight and expertise.
So, have perceptions changed over the years? Well, for absolute certainty I can say that mine have. I no longer assume that all publications are correct, and recognise that all autistic people are individuals. I have learnt to challenge the notion of impairment and disorder, while still recognising the huge challenges faced by individuals and families. I have begun to recognise the damage that can be done by ignorance and misinformation. And I have learnt that changing perceptions through a better understanding of autism can significantly improve lives, and the best way to develop an understanding of autism is to listen to those who are autistic, their families and friends.
In terms of general perception – well, society is certainly moving slowly in the right direction, with more and more autistic people self-advocating and promoting their strengths, but there is an awful long way to go.
The report The Other Care Crisis is published by Scope, Mencap, The National Autistic Society, Sense and Leonard Cheshire Disability. The leading disability charities are concerned that the debate about social care reform has focused on the needs of an ageing population and sidelined the thousands of disabled people under the age of 65 who rely on care in everyday life.
All persons should be able to expect a reasonable standard of living and a social life, while for most of us, this will be reliant on ourselves to fund all of this by gaining employment and then organising our spending budget accordingly.
But there are persons within all communities for whom this is impossible or extremely difficult. Here I am referring to persons with a disability for whom the prospects of employment are not possible, or can only be gained by some considerable effort. For many persons, their only or main knowledge or involvement with people with a disability, will be academics who are disabled like Stephen Hawkins or the athletes who are disabled like in the Para-Olympics.
But, I am afraid these people are in the minority, there are many disabled persons for whom, none of the above is possible, even some basic employment may not be possible. The only income these people with disabilities will have, come from State Benefits, provided they are lucky to live in a country which provides these benefits. I say lucky and perhaps, this is not the correct word, because no matter how it is reported in local and national media regarding benefit fraud, State Disability Benefits are not easy to obtain, especially in the current financial climate. Please also bear in mind that these benefits are only to provide a reasonable standard of living, what ever reasonable means. Is reasonable another way of saying standard or average?
The report mentioned above ‘The Other Care Crisis’ is focused on the situation in the UK, where the provision of these benefits are from Central Government agencies, mainly connected to the Department of Work and Pensions (DWP).
The current benefits are:
Disability Living Allowance (DLA) is a tax-free benefit for disabled children and adults – what you’ll get, eligibility, applying, Personal Independence Payment
Disability Living Allowance (DLA) is paid at different rates depending on how your disability affects you
Carer’s Allowance is money to help you look after someone who needs to be cared for – eligibility, apply, claim for DS700
Employment and Support Allowance (ESA) money if you can’t work because of illness or disability – rates, eligibility, apply, assessment
Access to Work is money to help you do your job if you have a disability or health condition – eligibility, how to apply
Attendance Allowance helps pay for your personal care if you’re older or disabled – rates, eligibility, apply, claim form AA1A
Apply to become an appointee for someone claiming benefits – how to apply, stop being an appointee
But DLA is for 16-64 years olds, to be replaced by Personal Independence Payment (PIP) from April 2013 for new claimants, with existing DLA claimants being contacted over the next 2-3 years.
But as stated above, if your only income is State Benefits and these are cut, this is bound to affect your standard of living. If, this was only reasonable to start with, then what will it be called. If reasonable is standard or average, then is this bringing the funding down to provide a sub-standard of living or below average?
If you feel this is unreasonable you can contact your MP by following the link
In addition to the State Benefits, a person with a disability may be entitled or may be in receipt of a care package from their Local Authority from funding provided by Central Government. This will be in the form of Direct Payments from a Personal Individualised Budget. An individual will be expected to make a contribution from their own income towards their budget. These Direct Payments are not additional general income, but are there to pay for the costs of care, which have been shown to be required from the Assessment of Need and the resulting Support Plan. The Assessment of Need will be undertaken by an assigned Social Worker and the Support Plan from information in the Assessment will be prepared by either the assigned Social Worker or an assigned Support Planner. The Support Planner could be either employed by the Local Authority or from an independent organisation.
But due to the current financial crisis in the World and especially the UK, all Local Authorities have been directed by Central Government to make savings from their spending. This is not only for this year, but from the last few years and also for some years to come. All persons in receipt of a service from a Local Authority are effected, not only those receiving benefits. So, not only could your sole income of State Benefits be cut, but Local Authorities will also be tightening their own eligibility criteria for entitlement to Direct Payments. This will further affect your standard of living.
Should this essential spending, even be subject to cuts?