What is autism?

Defining Autism

This page is a starting point for everything about autism; this page has a general overview of autism and Asperger's Syndrome, myths around autism and information on causes and genetics.

Autism

Autism Spectrum Disorder (ASD), Autism Spectrum Condition (ASC), autism

Autism or Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental condition that impacts how people experience the world and relate to others. Being a spectrum disorder autism is different for each person and can affect them differently. Some on the autism spectrum have learning disabilities, mental health issues or other conditions.

The main areas that people on the spectrum have difficulties with are social communication and interaction and restricted and repetitive behaviour patterns, routines and interests.

Case Study

John

Asperger's Syndrome Diagnoisis

Having suspected that I might be on the Autism spectrum, I asked my GP for a referral to see a specialist psychologist to get a professional assessment. The result was yup, I’m an Aspie, and that’s that! Once I began to understand how this diagnosis felt, I made it my business to find out what help I could get. A superb NHFT Occupational Therapist spent an hour or so with me each week for around 12 weeks, helping me understand how I related to & could rub along with all the non-Aspie’s around me.

Asperger's Syndrome

Asperger's Syndrome is a part of the autism spectrum; people with Aspergers are average or above-average intelligence. Those with an Asperger's diagnosis don't have the learning disabilities that many autistic individuals have but can have specific learning difficulties, for example, dyslexia, dyspraxia, dyscalculia and dysgraphia. There are usually fewer problems with speech, but challenges with understanding and processing language remain.

Diagnosis of Asperger's Syndrome

Due to Asperger Syndrome varies widely between individuals, making diagnosis difficult is often diagnosed later in children and sometimes goes undiagnosed until adulthood compared to autism.

Use of the term Asperger

Asperger Syndrome gets its name from an Austrian paediatrician, Hans Asperger. In 2018 a study was published researching his relationship with the Nazi regime, this concluded that he assisted with their euthanasia programme. This connection should be no reflection on those with the diagnosis of Aspergers. Many people with this diagnosis prefer to use the term "Aspergers" instead of "autism".

Links to more information on the subject are below.

Pathological Demand Avoidance (PDA)

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Autism Myths

With a growing understanding and acceptance of autism, there are still some common myths. These myths contain false information around autism and perpetuate negative perceptions of autism that can impact the lives of the many people diagnosed with autism.

People with autism don't want friends

Autistic individuals can struggle with social communication and interaction. Occasionally they can come across as shy or unfriendly; this has no reflection on their want to have friends.

Autism only affects children

Autistic children become autistic adults. Autism is a life long condition.

People with autism can't feel or express any emotions

Autism doesn’t cause people to be unable to feel emotions; it just affects how the person communicates those emotions and how they perceive the feelings and expressions of others.

Everyone is a bit autistic

You may recognise autistic traits and behaviours in yourself or others; however, to have an autism diagnosis, a person must consistently display behaviours across all the different areas of the condition. Just having a fondness for routines, a good memory or being shy doesn’t make a person ‘a bit autistic’

People with autism are intellectually disabled

Autistic individuals can have any level of intelligence. Aspects of autism can give people the impression that autistic individuals have a lower level of intelligence when the intelligence levels in the autistic community vary between people the same as it does for those without autism.

People with autism are just like 'rain man'

A person can be anywhere on the spectrum, meaning the characteristics, skills and abilities are different from person to person. One person’s abilities and limitations are no indications of another person’s.

Vaccines cause autism

There is evidence that vaccines do not cause autism, and the original paper was disproven and retracted in 2010, and the doctor responsible was removed from the UK medical register. Today several groups claiming still claim there is a link between autism despite this being proven wrong. Vaccines go through rigorous testing before being given to anyone to ensure that they are safe.

Children with autism can't become independent adults

Many children with autism grow up to be adults who live independently, work, and develop close friendships and relationships. Autistic adults may require additional support throughout their lives based on personal circumstance and any other needs or conditions they have.

Only boys can have autism

The current sex ratio for autism is roughly four boys to every girl. The high rate of boys diagnosed with autism compared to girls may be due to autism showing differently in girls making it harder to diagnose. Evidence suggests that autism presents differently in girls, and different diagnostic criteria should be used for diagnosing girls to take into account the differences.

You should try to stop and autistic child's repetitive behaviour

Sometimes, children engage in repetitive behaviour because they are bored, stressed or playing. Recognising the function of the behaviour is important. Repetitive play, or stimming is something we all do to self-regulate, but in people with autism, it can be more pronounced. It can be detrimental to stop self-soothing behaviour, but if it is inappropriate, it may be necessary to adapt the behaviour or teach where it should occur.

Autism is caused by bad parenting

The bad parenting myth originates from poor research conducted in the 1950s, suggesting that mother’s who lacked emotional warmth caused autism, by the 1960s, this was widely refuted and disproved. There is no evidence that poor parenting or poor parent-child relationships cause autism. Genetic factors cause autism, possibly combined with environmental factors in utero.

People with autism can't understand the emotions of others

Autism usually impacts how a person interprets and understands unspoken social communication, so someone with autism might not detect sadness based on someone’s body language or sarcasm in a person’s voice. But, autistic individuals are more likely to empathise and show compassion towards emotions communicated directly.

Autism Causes

There is no single cause for autism, investigations and studies into potential causes for autism are continuous. Many believe that genetics factor into autism and some believe there could be an environmental impact too. Despite many years and much money spent on research into the causes of autism, we still don’t know the answer.

To some extent, parents in the United States pushed for genetic study to find the cause. Potential factors for this could be disproving the ‘refrigerator mother’ theory, the research found no single gene to be the cause of autism, and study delves deeper into genomic complexities.

More recently, autistic adults express that they are not so interested in finding out the cause of autism. What they would like is research into making their day to day lives more comfortable, access to services, etc.

Autism and Genetics

While genetic links are still not fully understood and an area still being researched, it is widely recognised that genetic relationships do exist. Research on this is continuing. There are several studies in progress to determine the specific genetic factors associated with the development of autism. Up to 90% of children diagnosed with autism will have one or both parents who have significant traits if not diagnosed with the condition. Twin and family studies suggest that some people have a genetic tendency to autism, and families with one child with autism, the likelihood of another child having autism increases.

Language and Terminology

There is a challenge of finding a common language when referring to autism and the autistic community due to the complex nature of autism with it being a spectrum disorder.

This website will follow the language used in the Northamptonshire All-Age Autism Strategy, the National Health Service and the National Autistic Society. The terminology will be as followed; "autistic individual", "autistic person" "autistic community", "autism" and "autistic". There will be the occasional use of "autistic adult" and "autistic child/children" when the need to differentiate between the two life stages arises.

This choice is to retain consistency across everything and based on the results from Kenny et al. "Which terms should be used to describe autism? Perspectives from the UK autism community" (2015), which is linked below. The research found that adult individuals and their families prefer the term "autistic" and identity-first language. Simultaneously, professionals tend to prefer person-first language, such as "Individual with autism".

When referring to autism in a medical or clinical context, we will use the term "autistic spectrum disorder". However, we are aware of the potential negative connotations related to the word "disorder" and where possible will use the abbreviation "ASD"

Person First Language

People/Person first language puts the person before a diagnosis, describing that a person "has" rather than a person "is". Within autism, this is used as a "person with autism", "person on the spectrum" and "individual with autism". There is a division over the language and terminology for autistic people, if you are unsure, where possible, ask the person what their language preferences are.

More information on language and terminology is linked below.