Autism Spectrum Disorder is a range of neurodevelopmental conditions, including Autism and Asperger’s syndrome. Individuals on the autistic spectrum experience difficulties with social communication and interaction, and also exhibit restricted and repetitive patterns of behaviour, interests and activities.
In neuro-developmental conditions the development of the central nervous system, e.g. brain, has somehow been disrupted either before or in the first years after birth, or during early childhood. They can manifest as neuropsychiatric problems or problems with motor function, attention and learning, language, non-verbal communication, etc. We do not know yet exactly what causes this disruption for most people with ASD, and there may be multiple causes. However, some people with ASD have a known difference, such as a genetic condition. It is important to note that some people without ASD might also have some of these difficulties. But for people with ASD, the difficulties can make life very challenging.
For many decades, in the last century, there was a confusion between Autism and Schizophrenia, which are two very different psychiatric conditions. This was because the term Autism was first used to describe symptoms of Schizophrenia. Unfortunately, it was re-used in the late 30’s by two psychiatrists, Hans Asperger and Leon Kanner, to describe children with Autism, as we know it today. From then on, due to a confusion in the use of the term, many children with Autism were diagnosed with Infantile Schizophrenia, and It was only in the 80’s when these two very different psychiatric diagnoses were totally separated in the psychiatric diagnostic systems, and their differences were precisely defined. Psychotic symptoms, like delusions and auditory hallucinations (“hearing voices”), which are common in Schizophrenia, are not typical characteristics of Autism. However, sometimes the two disorders can co-exist, and people in the Spectrum can suffer psychotic symptoms, and vice versa. In this case, the diagnosis is Autism Spectrum Disorder with Psychotic symptoms or with Schizophrenia.
ASD begins before the age of 3 and lasts throughout a person’s life, although symptoms may improve over time. A lot of children are not finally diagnosed until they are older, and sometimes is diagnosed only in adolescence or even in adulthood. There is often nothing about how people with ASD look that sets them apart from other people, but they may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less. Long-term problems may include difficulties in performing daily tasks, forming and maintaining relationships, and maintaining a job.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: Autistic Disorder, Pervasive Developmental Disorder not otherwise specified (PDD-NOS), and Asperger’s syndrome. These conditions are now all called Autism Spectrum Disorder.
Individuals in the Autism Spectrum may suffer other psychiatric, or physical health conditions, such as Anxiety disorders, Depression, Obsessive Compulsive Disorder, Self-injurious behaviours, such as self-cutting or head banging, Epilepsy, Allergies, Crohn’s and other Bowel diseases, and certain genetic conditions. Some present with a Learning Disability. Other neuro-developmental conditions, such as ADHD, Dyslexia (problems with reading) and Dyspraxia (problems with coordination of movements and some motor skills such as riding a bicycle) are also common.
The autism rights movement promotes the concept of neurodiversity, which views autism as a natural variation of the brain rather than a disorder to be cured. Neurodiversity advocates point out that neuro-diverse people often have exceptional abilities alongside their weaknesses. For example, a person with autism may have exceptional memory or exceptional abilities in certain skills like calculation, art, map making, computer programming, computer gaming development, or music.
How common is ASD?
It is estimated that 1-2% of the population, in the world and UK, are on the autism spectrum. Males are diagnosed four times more often than females, although some scientists advocate that many girls in the autism spectrum are not diagnosed because they present with different characteristics than boys.
What can cause ASD?
The answer is we do not know. However, many risk factors have been identified in research, such as genetics, maternal diabetes during pregnancy, or maternal and paternal age over 30, and use of prescription medication by the mother during pregnancy, such as Valproate (used in treatment of Epilepsy or Bipolar Disorder). It appears that somewhere between 74% and 93% of ASD risk is heritable. Variations in brain’s anatomy and how brain cells connect with each other may also be important. Other researchers have raised the question of influence of gut bacteria via causing an inflammation; this is because up to 70% of autistic individuals have problems like gastric reflux, diarrhoea or constipation, bowel diseases like Crohn’s, and food allergies. It has been suggested that the MMR vaccine may cause autism; this now has been disproven by subsequent studies and by the fact that the original study, in 1998, had many flaws.
What are the signs and symptoms of ASD?
Individuals with ASD present with difficulties in three main domains of their lives, social skills, communication and unusual interests and behaviours. They may also present with other symptoms.
Social issues are one of the most common symptoms in all of the types of ASD. People with an ASD do not have just social “difficulties” like shyness. The social issues they have cause serious problems in everyday life. Examples of social issues related to ASD are:
- Does not respond to name by 12 months of age
- Avoids eye-contact
- Prefers to play alone
- Does not share interests with others
- Only interacts to achieve a desired goal
- Has flat or inappropriate facial expressions
- Does not understand personal space boundaries
- Avoids or resists physical contact
- Is not comforted by others during distress
- Has trouble understanding other people’s feelings or talking about own feelings
Some people with an ASD might not be interested in other people at all. Others might want friends, but not understand how to develop friendships. Many children with an ASD have a very hard time learning to take turns and share—much more so than other children. This can make other children not want to play with them. People with an ASD might have problems with showing or talking about their feelings. They might also have trouble understanding other people’s feelings. Many people with an ASD are very sensitive to being touched and might not want to be held or cuddled. Repetitive movements such as flapping arms over and over are common. Anxiety and depression also affect some people with an ASD. All of these symptoms can make other social problems even harder to manage.
Each person with ASD has different communication skills. Some people can speak well. Others can’t speak at all or only very little. About 40% of children with an ASD do not talk at all. About 25%–30% of children with ASD have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood. Examples of communication issues related to ASD are:
- Delayed speech and language skills
- Repeats words or phrases over and over
- Reverses pronouns (e.g., says “you” instead of “I”)
- Gives unrelated answers to questions
- Does not point or respond to pointing
- Uses few or no gestures (e.g., does not wave goodbye)
- Talks in a flat, robot-like, or sing-song voice
- Does not pretend in play (e.g., does not pretend to “feed” a doll)
- Does not understand jokes, sarcasm, or teasing
People with ASD who do speak might use language in unusual ways. They might not be able to put words into real sentences, may say only one word at a time, repeat the same words or phrases over and over, or repeat what others say, a condition called echolalia. Some people with an ASD can speak well but might have a hard time listening to what other people say. People with ASD might have a hard time using and understanding gestures, body language, or tone of voice. For example, people with ASD might not understand what it means to wave goodbye. Facial expressions, movements, and gestures may not match what they are saying. For instance, people with an ASD might smile while saying something sad. People with ASD might say “I” when they mean “you,” or vice versa. Their voices might sound flat, robot-like, or high-pitched. People with an ASD might stand too close to the person they are talking to, or might stick with one topic of conversation for too long. They might talk a lot about something they really like, rather than have a back-and-forth conversation with someone. Some children with fairly good language skills speak like little adults, failing to pick up on the “kid-speak” that is common with other children.
Unusual Interests and Behaviours
Examples of unusual interests and behaviours related to ASD are:
- Lines up toys or other objects
- Plays with toys the same way every time
- Likes parts of objects (e.g., wheels)
- Is very organized
- Gets upset by minor changes
- Has obsessive interests
- Has to follow certain routines
- Flaps hands, rocks body, or spins self in circles
Repetitive motions are actions repeated over and over again. They can involve one part of the body or the entire body or even an object or toy. For instance, people with an ASD might spend a lot of time repeatedly flapping their arms or rocking from side to side. They might repeatedly turn a light on and off or spin the wheels of a toy car. These types of activities are known as self-stimulation or “stimming.” People with ASD often thrive on routine. A change in the normal pattern of the day—like a stop on the way home from school—can be very upsetting to people with ASD. They might “lose control” and have a “melt down” or tantrum, especially if in a strange place. Some people with ASD also may develop routines that might seem unusual or unnecessary. For example, a person might try to look in every window he or she walks by a building or might always want to watch a video from beginning to end, including the previews and the credits. Not being allowed to do these types of routines might cause severe frustration and tantrums.
Some people with ASD have other symptoms. These might include:
- Hyperactivity (very active)
- Impulsivity (acting without thinking)
- Short attention span
- Causing self-injury
- Temper tantrums
- Unusual eating and sleeping habits
- Unusual mood or emotional reactions
- Lack of fear or more fear than expected
- Unusual reactions to the way things sound, smell, taste, look, or feel
People with ASD might have unusual responses to touch, smell, sounds, sights, and taste, and feel. For example, they might over- or under-react to pain or to a loud noise. They might have abnormal eating habits. For instance, some people with an ASD limit their diet to only a few foods. Others might eat non-food items like dirt or rocks (this is called pica). They might also have issues like chronic constipation or diarrhoea. People with ASD might have odd sleeping habits. They also might have abnormal moods or emotional reactions. For instance, they might laugh or cry at unusual times or show no emotional response at times you would expect one. In addition, they might not be afraid of dangerous things, and they could be fearful of harmless objects or events.
How is ASD diagnosed?
Diagnosing autism spectrum disorder (ASD) can be difficult because there is no medical test, like a blood test, to diagnose the disorder. Professionals look at the child’s or adult’s developmental history and behaviour to make a diagnosis. ASD can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older, and some people are not diagnosed until they are adolescents or adults. This delay means that children with ASD might not get the early help they need. Early signs of ASD can include, but are not limited to.
- Avoiding eye contact,
- Having little interest in other children or caretakers,
- Limited display of language (for example, having fewer words than peers or difficulty with use of words for communication), or
- Getting upset by minor changes in routine.
As children with ASD become adolescents and young adults, they might have difficulties developing and maintaining friendships, communicating with peers and adults, or understanding what behaviours are expected in school or on the job. They may also come to the attention of healthcare providers because they have co-occurring conditions such as attention-deficit/hyperactivity disorder, obsessive compulsive disorder, anxiety or depression. Monitoring, screening, evaluating, and diagnosing children with ASD as early as possible is important to make sure children receive the services and support they need to reach their full potential. There are several steps in this process, like Developmental Monitoring, Developmental Screening, and Comprehensive Developmental Evaluation.
Developmental monitoring observes how your child grows and changes over time and whether your child meets the typical developmental milestones in playing, learning, speaking, behaving, and moving. Parents, grandparents, early childhood providers, and other caregivers can participate in developmental monitoring. You can use a brief checklist of milestones to see how your child is developing. If you notice that your child is not meeting milestones, talk with your doctor or nurse about your concerns.
Developmental screening takes a closer look at how your child is developing. Your child will get a brief test, or you will complete a questionnaire about your child. The tools used for developmental and behavioural screening are formal questionnaires or checklists based on research that ask questions about a child’s development, including language, movement, thinking, behaviour, and emotions. Developmental screening can be done by a doctor or nurse, but also by other professionals in healthcare, community, or school settings. A brief test using a screening tool does not provide a diagnosis, but it indicates if a child is on the right development track or if a specialist should take a closer look. A similar process can be used in adolescents and adults who have not been diagnosed in childhood. The Autism Spectrum Quotient (AQ) and Autism Spectrum Quotient with 10 questions (AQ-10) are questionnaires commonly used to identify adults who should have a more comprehensive assessment.
If the screening tool identifies an area of concern, a formal developmental evaluation may be needed. This formal evaluation is a more in-depth look at a child’s, or adult’s, development, usually done by a trained specialist, such as a developmental paediatrician, child or adult psychologist, speech-language therapist, occupational therapist, doctor, or other specialist. The specialist may observe the child, give the child a structured test, ask the parents or caregivers questions, or ask them to fill out questionnaires. The results of this formal evaluation determines whether a child needs special treatments or early intervention services, or both. In adults, the specialist will conduct a lengthy and comprehensive interview with the person, and a relative or other person who knows the individual from a young age. This interview will include a developmental and mental health history, a mental state examination, and in most cases a structured diagnostic test or interview. The results of this formal evaluation determines whether an adult needs special treatment and/or support. There are several structured diagnostic interviews, used with children or adults that aid clinicians to determine diagnosis of ASD. Examples are, the Autism Diagnostic Interview – Revised (ADI-R), The Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), and the Diagnostic Interview for Social and Communication Disorders (DISCO). The Adult Asperger Assessment (AAA) is used to evaluate adults with suspected ASD.
The Royal College of Psychiatrists has provided to psychiatric professionals, an “Interview Guide for the Diagnostic Assessment of Able Adults”, e.g. high-functioning, with ASD. This can be used by any senior clinician, such as a Consultant Psychiatrist, for an informal day to day diagnosis. However, for a formal diagnosis, that can be used in the courts, or for employment or educational purposes, one of the aforementioned diagnostic interviews, e.g. ADOS-2, AAA, etc. should be used. Professionals who undertake formal evaluation of a child or adult should have had special training in one of those, and should be certified to use them by the training authority. A complete formal diagnostic assessment is a lengthy process that can sometimes take more than 3 hours, and may require more than one meeting with the assessing professional. The involvement of a parent or another person who knew the individual in childhood is also usually required; a review of the school records, if available, can also be useful.
How do you treat ASD?
There is no known cure for autism, although those with Asperger’s syndrome, and those who have autism and require little-to-no support, are more likely to experience a lessening of symptoms over time. Several interventions can help children and adults with Autism. The main goals of treatment are to lessen associated difficulties, for example in social interaction and communication, and family distress, and to increase quality of life and independence. Although evidence-based interventions for autistic children vary in their methods, many adopt an educational approach to improve communication, and social skills while minimizing problem behaviours. It has been argued that no single treatment is best and treatment is typically tailored to the child’s or adult’s needs.
A multitude of unresearched alternative therapies have also been implemented. Many have resulted in harm to autistic people and should not be employed unless proven to be safe. However, a recent systematic review on adults with autism has provided emerging evidence for decreasing stress, anxiety, ruminating thoughts, anger, and aggression through mindfulness -based interventions for improving mental health.
Generally speaking, treatment of ASD focuses on behavioural and educational interventions to target its two core symptoms: social communication difficulties and restricted, repetitive behaviours. If symptoms continue after behavioural strategies have been implemented, some medications can be recommended to target specific symptoms or co-existing problems such as restricted and repetitive behaviours, anxiety, depression, hyperactivity/inattention and sleep disturbance. For example, Melatonin can be used for sleep problems, or stimulant medications for Hyperactivity or Attention problems. There is also limited evidence from small scale research that Antipsychotic medications, like Risperidone, may have positive effects on restricted and repetitive behaviours. However, due to concerns about side effects, to which people on the Autistic Spectrum may be more susceptible, their widespread use in children and adults with ASD is not recommended. Antidepressants, such as SSRIs, e.g. Sertraline, Fluoxetine, etc. have a limited role in helping individuals in the Autism Spectrum with their anxiety symptoms, and especially with their Social Anxiety.
What can I do to help myself?
If you are an adult and you have not been diagnosed as a child with Autism you can discuss with your GP a referral to the local Adult Assessment service. Many NHS organisations have now developed specialised services for assessment and support of adults in the Autism spectrum. Your GP will know if such a service is available locally, and in North Staffordshire there is. Alternatively, you can seek an assessment in the private sector. Some people see a formal diagnosis as an unhelpful label, but for many, getting a thorough assessment and diagnosis may be helpful because: a) it helps people (and their families, partners, employers, colleagues, teachers and friends) to understand why they may experience certain difficulties and what they can do about them b)it allows people to access services and support.
There are various organisations in the UK, which support children or adults in the Autism Spectrum, and their families, and offer information on Autism diagnosis and NHS and other services, and practical advice and support, and advocacy. They also offer advice on self-help skills and what to do information on employment, citizen’s rights, or disability benefits. Examples are, the National Autistic Society (www.autism.org.uk) , Child Autism UK (childautism.org.uk), or Resources for Autism (www.resourcesforautism.org.uk)
There are various on line resources and books that can be used as practical resources for adults on the Autism spectrum that promote self-understanding and directly teach effective ways of coping with emotional challenges, and improve psychological well-being. An example is Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide using CBT by Lee Wilkinson. The author takes the best of CBT therapeutic techniques to facilitate self-understanding, self-advocacy, and better decision-making in activities such as employment and relationships. It provides evidence based tools that can be used to learn new ways of thinking, feeling, and doing. Another example is, Social skills for Teenagers and Adults with Asperger’s syndrome – A Practical Guide to Everyday Life by Nancy J. Patrick. It provides step by step strategies for managing different social situations. Both books are available on Amazon or other booksellers, or they may be available to borrow from local libraries. Other examples are, the Staying Independent Checklist, which has been designed by the WMAHSN digital health Stoke-on-Trent (digitalhealthsot.nhs.uk), and websites that offer information and support on sensory difficulties such as the Asperger’s Test Site (www.aspergerstestsite.com) or Musings of an Aspie (www.musingsofanaspie.com). There are also lists of self-help books available at www.readingagency.org.uk/readingwell, which can be borrowed from local libraries, and a range of self-help leaflets available online at https://web.ntw.nhs.uk/selfhelp/ which cover a number of common mental health conditions and which may also be helpful to look at.
Adults in the Autism spectrum may find also benefit from reading some literature written by other autistic adults. For example, authors such as Luke Jackson, Temple Grandin, Wendy Lawson and Liane Holliday. They may also wish to read the book ‘Being Autistic’ (edited by Caroline Hearst) in which nine adults share their story of receiving a diagnosis of autistic spectrum disorder. The book can be downloaded for free (with a suggested donation of £3) at http://www.autangel.org.uk
The National Autistic Society publishes The Spectrum magazine, which is the UK’s largest collection of autistic art, poetry and prose. It is created by autistic people, and covers all things autism – from articles to everyday reflections of life on the spectrum. It is published every 3 months, and can be downloaded for free from the NAS Website
In North Staffordshire especially, adults in the Autism spectrum may wish to connect with The Social Agency. This is a group for people with higher functioning autism and/or mild learning disabilities, who meet once or twice a week. The purpose of the meetings is to help people gain confidence, encourage them to “come out of their shells”, and to help them make new friends. It also gives people a chance to talk about any issues they are experiencing in their lives (thesocialagency.net). Other local organisations who support people with Autism in N. Staffordshire are the North Staffs Autism and Asperger Association (NSAAA), and Lifeworks Staffordshire. Stoke on Trent City Council provide a list of community based activities which are learning difficulty friendly. This is available at: www.stoke.gov.uk/info/20052/adults_with_disabilities/248/disability-friendly_activities. Alternatively, the list can be made available by emailing: Community.Development@stoke.gov.uk
Adults in the Autism spectrum may be entitled to financial support and services from local authorities and for further information, may find it helpful to look at the following websites: http://www.autism.org.uk/Living-with-autism/Benefits-and-community-care.aspx https://www.gov.uk/browse/benefits/disability
Some autistic adults need help and support in order to live independently in the community. They can seek a community care assessment, and can do this by contacting the local Adult Social Care Teams. Contact numbers for the Social Care teams in North Staffordshire are provided below
Students in the autism spectrum, who are currently in higher education, College or University, may be entitled to Disabled Students’ Allowances (DSA) which are grants to help pay the extra costs he may have as a direct result of autism. Further information can be obtained from the Government website: https://www.gov.uk/disabled-students-allowances-dsas or alternatively the University Student Disability Service will be able to offer advice
Individuals in the autism spectrum have a range of abilities, but it is not uncommon for autistic adults to be unemployed, or to find themselves working in areas which are not consistent with their interests and abilities. In our clinical experience, individuals on the autistic spectrum function best when they opt for a field in which they have skill and ability, in other words, if they find their In addition, other factors such as social demands and physical environment play a serious role in decisions about work. A formal diagnosis can help to discuss those issues with a current or future employer. A diagnostic report will describe some of the common difficulties autistic adults can experience in the workplace, and make comments about particular things, and suggest the type of support and guidance which would help them with their challenges
Individuals in the autistic spectrum who are unemployed can go to their local Jobcentre Plus and request an appointment with the Disability Employment Advisor (DEA). DEA’s provide support to people with a disability, including autistic people. Not all DEA’s will have specific knowledge about autism but they will try to find suitable employment. They provide information about suitable vacancies and the range of programmes and initiatives available. https://www.gov.uk/looking-for-work-if-disabled
People who care for individual in the autism spectrum are entitled to a Carer’s assessment, as they may be providing care on a regular and substantial basis. The purpose of the Carer’s assessment is to allow the carer to express their views and concerns about their caring role. If the Carer’s assessment finds that they have an eligible need, they should receive services to help them continuing caring. In North Staffordshire they will need to contact, either the Stoke council Adult Social Care Team (call 0800 561 0015 or 01782 234567) or the Staffordshire Council Adult Social Care Team (call 0300 1118010 or 07814194111). They may also wish to seek support from the North Staffs Carers Association (carersfirst.com or call 01782 793100)
*Consultant Psychiatrist, Devon Partnership Trust, Exeter, England