BOOK OF THE MONTH
ODD GIRL OUT by Laura James
'An autistic woman in a neurotypical world'
Laura James is a confident, high-achieving woman in a long-term relationship. She is also a mother,successful journalist and last but not least, a woman on the autistic spectrum.
Autism friendly cinemas
The ODEON chain of cinemas is now providing autism friendly screenings on one Sunday morning each month. They have created a much lower sensory environment for these special screening. This includes:
- Softer lighting within the cinema
- Lower than usual sound levels
- No advertising or trailers-just the actual film
There are 90 ODEON branches through-out the UK and Ireland, so find one close-by should be fairly easy for most people.
For more information contact: ODEON CINEMAS
A café where I can rest my autistic brain!
One of my favourite pastimes, is spending a couple of hours in a café with a regular Americano and my laptop.
It's a great place to work these days, There's something about the atmosphere of a nice café that allows me to be really creative and productive, as I write articles for this website and my up-coming book on autism
A growing number of companies are offering autism-friendly holidays. Companies like Go Provence, Door To Door and Disabled Holiday Access, provide a wide range of exciting breaks.
What is Autism?
Autism is a complex developmental condition. Also known as Autistic Spectrum Disorder, the condition is present at birth, although depending on the severity of one's symptoms, can go unrecognised till much later in life.
This is largely because parents, teachers and child-care professionals, may not spot the subtle symptoms displayed by people with milder forms of autism. These less severe variants of autism are known as: Asperger Syndrome and High Functioning Autism. Often, the symptoms are more easily identifiable in early childhood. For example: Parents may wonder why their three or four year old child does not make good eye contact, or like being hugged. Other autistic children may actually enjoy being held and will naturally make good eye contact. They may however, appear to be frequently lost in a world of their own, and spend hours lining up their toys. Autistic children are also likely to suffer from high levels of anxiety. In turn, this anxiety may result in outbursts of uncontrollable, temper fuelled meltdowns.
Although everyone on the autistic spectrum has to meet the same diagnostic criteria, each individual will display their symptoms in a unique way. This is due to the influence of personality traits, environmental factors and other co-existing developmental, or psychological disorders.
Parents that suspect their child may have autism, often struggle to get their child assessed. The burden of proof often lies, initially with the parents. They will need to put a strong case to the doctor before a referral to a clinical psychologist for diagnosis is granted.
Most undiagnosed adults struggle through life, employment and relationships. They are very likely to have suffered a range of mental health conditions since childhood, before arriving at an autism diagnosis in their 30's, 40's and even 50's.
The spectrum of sometimes contradictory symptoms, give rise to a vast range of ability and disability: Non-verbal to highly eloquent. Unable to travel independently, to highly skilled car drivers. From needing help with basic needs, to highly successful software developer, artist or entrepreneur.
Historically, it has been thought that there are approximately four times as many males as females on the autistic spectrum. This ratio has closed over the past few years, as many more females are diagnosed.
A Brief History of Autism and Asperger Syndrome:
In 1908, the noted Swiss psychiatrist Eugen Bleuler first used the word autism to describe a group of patients that appeared to be completely withdrawn and self-absorbed. Derived from the Greek word autos, meaning self, Bleuler began to use the term autism in relation to several of these patients.
Bleuler also created the term: schizophrenia. This is interesting because even in the early 1970’s, many children with symptoms we would now define as autistic, were often diagnosed with childhood schizophrenia.
Following Eugen Bleuler’s earlier work, the psychiatrist Leo Kanner began his own research into eleven children displaying unusual behavioural patterns. In 1943 his paper entitled “Autistic Disturbance of Affective Contact,” was published.
Another popular idea held by many doctors during the 1950’s and 60’s, was that of the “refrigerator mum.” They thought that the symptoms of these withdrawn and socially isolated children, had been induced by cold, and emotionally distant mothering.
Asperger Syndrome is named after the paediatrician, Hans Asperger. In the 1940’s, Asperger observed symptoms that appeared similar to autism, but were less severe. This group of young boys, had normal intelligence and language development, but still had significant deficits in their social and communication skills.
Autism was first entered into the DSM-3 in 1980 when it was initially called, Infantile autism. Asperger Syndrome was added to the DSM-4 in 1994.
Autistic Spectrum Disorder-Symptoms:
People on the autistic spectrum will typically have difficulties in the following areas:
- Verbal and non-verbal social communication
- Social imagination
- Social interaction
- Processing of language
- Inability to make and keep friends
- Misinterpretation of social cues and spoken language
- Repetitive behaviours
- Rigid thought patterns
- Emotional regulation deficiencies
- Dislike of change
- A tendency towards social isolation
- Difficulties falling and staying asleep
- High levels of anxiety
- Aversion to noise, light, certain textures and social stimuli
- Obsessive interests in one or two topics
- Encyclopaedic knowledge of the their chosen interest
- A fascination with objects that turn. For example wheels on a toy train
- A tendency to organise objects in a straight line
- Stiffness of facial expressions
- Stimming: This can include rocking backwards and forwards, hand flapping, toe walking, jumping up and down, repeatedly touching surfaces, wall bouncing
- Difficulty making eye contact
Some Common Misconceptions about Autism:
- Everyone with Asperger Syndrome is a computer geek
- Everyone with autism is a savant with incredible abilities
- Autism is caused by immunisations
- Everyone with autism is like the Rainman character
- Everyone with autism has a global learning disability
- Autism has only been around since 1960
- Autism can be “cured”
- Autism can be treated with medication
- Females can’t be autistic
- Everyone with autism is the “same”
- People with autism never make eye contact
- Everyone with Asperger Syndrome is a high achiever
Although the key components necessary for a diagnosis of autistic spectrum disorder are present in everyone with autism, there are many variations in the way someone displays their symptoms. For example, some may have trouble making eye contact, while others make too much eye contact. Alternatively, there are people on the spectrum that cover their ears when they hear a police siren, while another may not be bothered by loud noise.
Autistic people display unique combinations of personality traits and complex autism symptoms. This means that highly individualised personal care plans are created by professionals that provide care for people on the spectrum.
Common Co-Existing Conditions:
There is range of commonly co-existing conditions present in autistic people. Most of these conditions are also present in many non-autistic or Neuro-typical people. These include:
- Bipolar disorder
- Learning disorders, both specific and global
- Gut problems, often in autistic children
There is also a range of opinion amongst doctors, on whether Obsessive Compulsive disorder would be diagnosed in someone with an existing autism diagnosis.
Despite recent government legislation in the UK, the route to diagnosis for most people can still be a lengthy and difficult process. This is especially true for undiagnosed adults. There are now, many cases where a psychologist treating a patient for a mental health condition, concludes the patient may be on the autistic spectrum, and either performs the diagnosis or refers on to another practitioner.
For most people, assessment is usually offered via a doctor's referral to a Clinical Psychologist. The process of diagnosing children and adolescents is similar, although here there will be other pathways available through local children's mental health services, and the school's special education department.
Aspergers Syndrome and High Functioning Autism:
Classic autism is typified by extreme variants of these symptoms, and often accompanied by a global leaning disability.
Some people are diagnosed with Asperger Syndrome or High Functioning Autism. These conditions are considered to be less severe forms of autism. However, there is a large amount of variation within this category. Although the terms Asperger Syndrome and High Functioning Autism are often used interchangeably. One defining difference is that delayed speech development is a factor in High Functioning Autism. This is not the case with Asperger Syndrome.
People at this end of the spectrum may be more likely to live relatively independent lives but with varying degrees of difficulty. Asperger Syndrome and High Functioning Autism are conditions that have an enormous impact on the lives on people. Amongst this group we are likely to see chronic mental health conditions, high levels of unemployment, social isolation and confrontation with the legal justice system.
Treatment and Support:
There is no treatment for autism as such. But many strategies are used by specialists in order to people with autism improve their social skills, learn to travel by themselves and to live as independently as possible. Teaching people on the autistic spectrum how to cope with their many challenges, is key in helping them lead more fulfilling lives. Providing a calming, sensory space in their home can reduce anxiety and regulate difficult emotions. The use of pictures to supplement verbal language is a proven way to improve communication. Trained autism professional will use clear, unambiguous language. People with autism may take a long time to answer. Experienced professionals will also allow for this.
The medical treatment received by many autistic people, will be for their co-existing conditions. for example they may need medication for epilepsy, bipolar disorder, schizophrenia or anxiety. There is also evidence that Cognitive Behavioural Therapy, and Mindfulness programs are effective in achieving greater levels of mental health.
As with anyone suffering from poor mental health, appropriate treatment for these co-morbid conditions can greatly improve the lives of autistic people.
Terminology Used In Relation To Autism:
- Theory of mind
- Weak central coherence
- Executive function
- Triad of impairments
Abilities and Disabilities:
Autistic people can have a very uneven skill set. They may possess a great talent for music, art or science, but struggle with life's everyday challenges. Those brilliant and rather stereotypical Aspergian computer nerds do exist, but their commendable attention to detail, reliability and honesty is offset by awkward social interactions and misunderstand office politics.
Another tiny subgroup are the autistic savants . Born with extraordinary, and inexplicable gifts, these people are extremely rare amongst the autistic community, and do not represent the majority of people with autism.
It's usually the case that for most people with autism, their abilities are measured against realistic expectation. Sometimes even the smallest achievement can be seen as a great victory for all concerned. These important moments are invaluable in increasing self-esteem and should be celebrated.
Philip is a twenty-five year old with autism and learning difficulties. Because of his physical strength, Phillip’s mother is able to care for him at home. As a result, he has lived in a residential home for seven years with other autistic people. Whilst Phillip can hold a basic conversation, his use of language is limited. Phillip has great difficulty following instructions, and often takes up to five minutes before he is able to respond to a question.
Phillip’s challenging behaviour can result in inappropriate, and threatening sexual advances to female members of staff. He has severe deficiencies in the areas of, Social Imagination and Social Interaction.
He enjoys Ten Pin Bowling, watching cartoons on the computer and trips to the cafe with members of the residential staff.
With the help of his key worker, Phillip is currently learning how to travel on the bus independently, this is partially to improve his confidence, as in reality, it may be too risky allow him to travel alone.
Whilst every effort is made by staff to help Phillip attain the highest possible quality of life and independence, It’s clear that will need a permanent placement, in a specialist, residential home.
Jamie is a twenty-four year old diagnosed with Asperger Syndrome and Bipolar disorder. He lives at home with his parents and is able to travel independently on the buses and trains. Although Jamie has a well developed vocabulary and general knowledge, he would be unable to cope with any form of employment. Jamie attends a local day centre for people with autism where he is able to take part in various activities and learn social skills from a team of trained staff
Jamie enjoys Kart Racing and music. He has a great sense of humour and enjoys the company of others. At times, his Bipolar Disorder appear to amplify his Autistic symptoms. This results in high levels of anxiety.
Long term expectation for Jamie, are likely to involve a need for permanent support and intervention from Social Services and Mental Health Team. It is unlikely that Jamie would ever be able to lead a fully independent life.
Lucy is a thirty-two year old executive in the financial industry. She has been plagued with bouts of anxiety, depression and OCD from early childhood. Along with the responsibilities of a high powered job, Lucy is a wife, and mother of two young children. Despite her achievements in life, she has always felt a “strange disconnectedness” to the people around her. Especially at work where she is generally thought of as, “distant, aloof and too honest,” by her colleagues.
During a bout of particularly bad depression, a psychologist, raised the possibility that Lucy may have Asperger Syndrome. Lucy researched the subject in her usual, obsessive way, and realised that she could relate to most of the symptoms described by other females on the spectrum.
Since her autism diagnosis, Lucy has began to understand her emotions more effectively, and she is implementing strategies to improve her lack of social skills. Diagnosis for Lucy, has been a very positive experience. She is creating a social-group for other professionals on the autistic spectrum, and thinking about writing a book about her own unique experience of autism.
Anna is a autistic nineteen-year old. She also has severe learning difficulties and epilepsy, which is partially kept in check with medication. Anna needs constant, one to one support so her basic everyday needs can be met. Communication with Anna is achieved mainly through sign-language and pictures, as a lack of speech creates difficult barriers for verbal communication.
Despite her challenges, Anna enjoys art, music and country walks. Staff need to be constantly alert in case Anna has an epileptic fit. She has fallen and sustained bruises many times due to an epileptic fit.
Anna has a remarkably positive outlook on life, and enjoys having people around her. She smiles a lot, and claps her hands whenever someone makes her laugh.
Anna is cared for by staff in a residential home as her parents could not cope with the high level of care need to support her. The severity of Anna’s complex combination are not expected to decrease. The task of her support staff is to do whatever.
The expectations for people diagnosed with Autistic Spectrum Disorder are many and varied. Many people will have extremely complex needs, and full time residential care is the only option. There is also the wide spectrum of more able individuals, that are capable of limited independence, but with support from social, and mental health services.
Lastly there is awareness of a growing category of adults with milder symptoms. These often undiagnosed people, have usually struggled throughout their life with employment and relationships. They may have been seen as eccentric or socially inept in their place of employment. Many people in this subgroup are now appearing on the diagnostic radar, and obtaining an autism diagnosis in their 40’s 50’s and even 60’s.
There is a growing awareness of Autism throughout society. These days, most people know someone that has a connection with autism. Perhaps a family member has an autistic child, or a friend has a spouse with Asperger Syndrome. Generally, there is a growing awareness of autism both in the media, medical professionals and emergency service providers such as the Police. But still, the level of support, and the route to diagnosis does not seem to have improved noticeably in the past few years. Parents with autistic children of all ages, including adults, are faced with enormous challenges, both financially and emotionally.
Until more effective long term support is more widely available, the overall quality of life for many people affected by autism, will not improve. There are signs however, that growing recognition of the condition is leading to greater acceptance and understanding in society. This may allow many people on the autistic spectrum to feel included, in all that life has to offer.