What is Autistic Spectrum Disorder (Autism)?
Autistic Spectrum Disorder is a neurodevelopmental condition that affects how people communicate, interact with others, learn, and process sensory information. There are a wide range of symptoms and severity levels.
Some common traits include:
Social Communication and Interaction Differences: Autistic people might use verbal and nonverbal communication differently, including using facial expressions, gestures, and tone of voice. They might prefer to avoid eye contact or not understand what you mean when you ask open questions.
Engaging In Repetitive Behaviours: Autistic people may engage in repetitive movements, such as hand flapping or rocking from time-to-time. They may have strong, specialist interest in specific topics, and may adhere to strict routines. All of these things are things they find comforting.
Sensory Sensitivities: Autistic people may over- or under-react to sensory input, such as sounds, lights, or textures. They may find some textures very comforting, and some quite difficult. They may struggle to explain these at times, so be patient and kind.
Autistic Spectrum Disorder replaces the previous diagnoses of Autism, Autism Spectrum and Asperger's Syndrome. Some people in the community prefer to simply call it Autism or Autistic Spectrum Condition, rather than disorder.
There are also a number of myths around ASD. Let's bust them.
What Are The Myths?
Autistic People Lack Empathy
Autistic people may experience and express empathy differently than neurotypical people, but they do not lack it.
They are capable of forming meaningful relationships and caring deeply for others.
They might struggle to understand what you are thinking or feeling, but not for lack of trying.Â
Autism Is Caused By Vaccines
There is no scientific evidence to support this claim.
Numerous studies have found no link between vaccines and autism.
The only study which found a link used falsified evidence, and the doctor has since been struck off.
Autistic People Are All The Same
Autism is a spectrum disorder, meaning that individuals with autism can have very different experiences and abilities.
It is important to avoid making generalisations about autistic people.
Don't assume your two autistic friends will have loads in common!
All Autistic People Are Geniuses/Savants
While some autistic people may have exceptional abilities in specific areas, this is not true for everyone.
Autism is a spectrum, and individuals have a wide range of strengths and challenges.
There is some evidence that autistic people have more savant skills than the general population, but not every skill, and the evidence is weak.
Everybody is Autistic These Days
Autism is still likely to be very under-diagnosed, especially in women and girls.
There is no evidence that suggests people are being given inaccurate or fake diagnoses.
The conservative approach to assessment likely means that there are more people being denied a diagnosis than being given one they should not.
How is Autism Diagnosed?
A medical doctor or multidisciplinary team usually diagnoses Autism Spectrum Disorder. Research suggests a prevalence rate of approximately 1 in 100 people in the UK, according to the National Autistic Society. Available data suggests that ASD is significantly under-diagnosed in women and girls.
To reach a diagnosis in children, they are assessed against criteria for social communication difficulties and restricted, repetitive behaviors using standardised assessments like the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), along with clinical observations and developmental history.
To reach a diagnosis, the individual must meet criteria in both domains and demonstrate that symptoms have been present since early childhood. For adults, a retrospective assessment of childhood behaviors and current difficulties is typically required.Â
Who Assesses For Autism?
An ASD assessment might be carried out by one or a number of the below as part of a Multi-Disciplinary Team (MDT):
One of the following Doctors:
Consultant Community Paediatrician
Consultant (Child and Adolescent) Psychiatrist.
An Associate Specialist / Specialty Doctor (a grade below a Consultant).
Clinical Psychologist or Practitioner Psychologist (non-medical doctors).
A Nurse Specialist in ADHD, Psychiatry, Mental Health or an Assistant Psychologist.
A Specialist Health Visitor or a Nursery Nurse for clinical observations.
A Clinical Support Assistant (QbTest or similar).
A Highly Specialist Speech And Language Therapist who carry out ADOS when children are less verbal, and also to provide assessment or treatment for their speech difficulties.
A Highly Specialist Occupational therapy who carry out ADOS bearing in mind their specialist knowledge around autism and sensory issues, and also to provide advice and treatment around sensory issues, or associated problems like Pica.
It is best practice for a child to be assessed by multiple professionals, but where this is more straightforward this doesn't always happen. Even when your children isn't assessed by multiple professionals, they will discuss your child in an MDT meeting to consider multiple expert perspectives.
Every area in England has a commissioned ASD assessment service of some kind for under-18s provided by an NHS Trust or a community provider. Their waits are often long and so sometimes adults might choose to use NHS Right To Choose.
How Does Autism Develop?
The exact cause of ASD is not fully understood, but research suggests that it's a complex interplay of various factors:
Genetic/Gene Mutation Variations: In very care cases, single cell gene mutations have been linked to ASD alongside other rare developmental conditions. There are also common cell gene mutations that also explain ASD, and research suggests there are hundreds. We also know some mutations are inherited by parents, or can occur spontaneously during egg fertilisation.
Brain Structure Differences: Some studies found young autistic children have slightly larger brains than their non-autistic peers although this difference disappears in adolescence. Alongside this, differences in specific brain regions have been observed, such as:
Cerebellum: Involved in motor coordination, balance, and some aspects of cognition and social interaction.
Amygdala: Plays a role in processing emotions and social information.
Frontal cortex: Involved in higher-order cognitive functions, such as planning, decision-making, and social behaviour.
Temporal lobe: Involved in language processing and social understanding.
Connectivity: Alterations in the connections between different brain regions have also been found in individuals with ASD. This may affect how different brain regions communicate and work together.
How Is Autism Managed?
Behavioral Therapies: Applied Behavior Analysis (ABA) is a commonly used therapy that focuses on teaching specific skills and behaviors through positive reinforcement. Other behavioral approaches like Pivotal Response Training (PRT) and Early Start Denver Model (ESDM) are also effective. ABA is quite controversial within the autistic community and has been compared to abuse and dog-training. A lot of practitioners and the community have moved towards Positive Behaviour Support (PBS) as a more affirming model.
Social Skills Training: Social skills groups and individual therapy can help individuals with autism develop social communication skills, understand social cues, and build relationships.
Occupational Therapy: Occupational therapy focuses on improving daily living skills, sensory processing, motor skills, and adaptive behaviours. This might mean helping them to manage their exposure to overwhelming sounds, integrate certain textures and learn coping skills, and even learn some motor skills such as writing, pen grip, etc.
Speech And Language Therapy: Speech and language therapy helps individuals with autism improve communication skills, both verbal and nonverbal. This might include building attention games, helping them with specific speech sounds, and coaching parents in using those interventions at home.
Medication: While there are no medications specifically for autism, certain medications may be prescribed to manage co-occurring conditions like anxiety, depression, or attention deficit hyperactivity disorder (ADHD).
Parent Training and Education: Parent training programs equip parents with strategies and techniques to support their child's development and manage behaviours that parents find challenging.
Reasonable Adjustments: In schools, children with autism may receive individualized education plans (IEPs) that provide accommodations and modifications to support their learning such as some one-to-one, access to a sensory room, etc. For adults in work or education, their employers or educators should take into account what they can do to make things easier for them including more remote learning/working, specialised equipment, etc.
Support Groups: Support groups for individuals with autism and their families provide a safe space for sharing experiences, gaining knowledge, and receiving emotional support.
Lifestyle Modifications: Maintaining a healthy lifestyle with regular exercise, a balanced diet, and good sleep hygiene can contribute to overall well-being and potentially reduce some challenges associated with autism.
Advice for Adults Who Care for Young Autistic People
Remember, your child can't control their autism. They are not deliberately trying to be difficult or defiant. They perceive and experience the world differently, and certain behaviours may stem from sensory sensitivities, communication challenges, or difficulties with social interaction. They need understanding, patience, and support. Here are some tips for supporting your child:
Don't Punish Meltdowns or Sensory Sensitivities: Meltdowns and sensory overload are not intentional misbehaviour. Help your child identify triggers and develop coping mechanisms. Create a calm and predictable environment, offer sensory breaks, and use visual schedules to provide structure and predictability.
Visual Schedules and Social Stories: Use visual schedules to help your child understand routines and transitions. Social stories can explain social situations and expectations in a way that is easier for them to understand.
Inform Teachers: Share information about your child's autism diagnosis with teachers, therapists, and other caregivers. Collaborate with them to develop strategies that support your child's learning and social development.
Be Patient and Understanding: Remember that your child is unique and may need different approaches than other children. Celebrate their strengths and interests, and focus on fostering their independence and self-confidence.
Seek Support: Connect with other parents of children with autism through support groups or online forums. These connections can provide valuable information, resources, and emotional support.
Advice for Young Autistic People
Remember, you have autism. That's just a fact. That doesn't mean you're helpless, but it does mean that you may experience the world differently and face unique challenges. While there is no cure for autism, many management options can help you thrive. These may include:
Psychoeducation: Learning about autism and understanding how it affects your brain can help reduce anxiety and self-blame. You may want to explore resources from the National Autistic Society.
Therapy: Therapies like Cognitive Behavioral Therapy (CBT) and Dialetical Behavioural Therapy (DBT) can help you develop coping strategies for anxiety, sensory sensitivities, and social interactions. Occupational Therapy can address sensory processing challenges and improve daily living skills.
Medication: While there are no medications specifically for autism, certain medications may be prescribed to manage co-occurring conditions like anxiety, depression, or attention deficit hyperactivity disorder (ADHD).
Sensory Strategies: Identifying and managing sensory sensitivities can significantly improve your quality of life. Experiment with sensory tools like weighted blankets, noise-canceling headphones, or fidget toys. Create a sensory-friendly environment at home and work.
Support Groups: Connecting with other adults with autism can provide a sense of community, understanding, and valuable insights into navigating life with autism.