We are often asked to define what autism is? There is no simple answer to that. Each autistic individual, whether they have been diagnosed by a professional, self-diagnosed adult or has identifiable traits, experiences the world differently. In the same way that we all have differences, we all look different, dress differently, have thoughts and views that are different to our neighbours, peers and family. There is no right or wrong, it is exactly that - differences.
Autism is a lifelong condition. It cannot be "treated" or "cured" and neither should it be. Being autistic is part of a person's identity, who they are, how they think and their individual personality.
There is no specific identified cause for autism and this is a common area for discussion. However, researchers believe it is likely to be a combination of genetic and environmental factors which can interrupt the development of the brain and central nervous system. You are born autistic, live as an autistic and die autistic.
Autism is a spectrum condition. Every individual is unique and it is important to understand that being autistic affects people in different ways to those directed by social expectations.
Any of the following may also impact on the way in which the autistic person presents:
- Level of learning ability
- Past experiences
- Personal qualities
- Health factors
- Mental health difficulties
- Additional conditions
- Level of processing ability
In 2019, autism was the fastest growing need type in Kent, UK.
All autistic individuals are affected in some way in the following areas:
Communication, in all its forms is complex and the ability to understand it varies for each individual, whether they are autistic or not. Communication takes part in many ways, not just via speech.
Autistic people may have difficulty with:
- non-verbal communication and
- maintaining relationships with others - professionals, peers, friends, parents etc
- processing the environment
- communicating because of unmet needs
Parent/carers often report difficulties that may challenge us in daily lives, such as:
- understanding other people's intentions and emotions,
- misinterpreting situations, this can be especially apparent in social situations where different responses are needed at different times and typically becomes more apparent in the teenage years when socialising becomes more complex,
- interpreting other's body language, facial expression or tone of voice and the content of what others are saying,
- literal interpretation of language, and an autistic individual may find it difficult to understand sarcasm, irony and jokes, autistic people like clear and precise language.
- Likewise, a non-autistic person may find it difficult to understand what the autistic person is trying to communicate; they may not be able to understand behaviours, humour and interactions that are meaningful to the autistic person.
Communication is a 2 way thing. It is essential that non autistic people understand how things are viewed and felt for autistic people and adapt their own behaviours and ways of communicating in relation to this.
Behaviours and interests
Autistic individuals typically find familiarity and repetition reassuring and it is common for parent/carers to report how rigid and inflexible their young person is around everyday situations, routines and changes. Many of our clients report their child can hyper focus on certain things that interest them for hours.
Commonly reported difficulties are:
- dealing with a new, unknown situation and the anxiety and behaviours surrounding unfamiliar circumstances, small or slight variations to routine, meaning the autistic individual has to relearn how to cope or undertake a task,
- repeating speech sounds or words and phrases repeatedly,
- repeated movements (hand flapping, jumping etc, these can also be known as stimming)
- noticing the small details but missing the bigger picture,
- desired interests which they can have an incredible passion and concentration for,
- hiding their 'true state' in some places, such as school (also known as masking)
- difficulty around emotions
It's important to note that there are many reasons for behaviours, whether you are autistic or not. It is also important to note that behaviours are not necessarily negative or challenging. Sensory, anxiety, environmental factors can all affect us on many different levels and the responses we have.
Sensory related difficulties
We process sensory information all the time through hearing, seeing, smelling, tasting, touching, moving and our internal body messages. Individuals on the autistic spectrum have difficulties with their central nervous system and ability to process these senses. Some may be under responsive and others over responsive, and this varies from sensation to sensation, meaning each person is unique to their response, to make things even more complex, these responses can vary from moment to moment depending on emotional state and the environment the person is in. It's complicated!
Common reported difficulties are:
- certain noises can be painful or background noise can sound like it is on full volume,
- smells can be overwhelming and in certain individuals can even make the young person feel physically ill,
- touch is avoided and can feel painful or uncomfortable. Alternatively touch can feel good to the autistic individual and deep compression hugs are given with no relation to the recipient,
- certain food types are avoided or cannot be eaten if they are touching another,
- difficulties with feeling restless or bumping into objects, spinning.
When a young person is feeling overwhelmed with too much sensory stimuli they experience what is commonly known as 'sensory overload'.
Sensory difficulties is a very complex area and whilst we are not medical professionals we have years of our own experiences both from our own children and ourselves that we can relate to. We can advise on your child's presentation and give you some ideas and strategies of ways to help and who to speak to in order to get an occupational therapy referral.
A diagnosis can help the person, their family, supporters and friends to understand how best to help, learn strategies and enable the appropriate educational, therapeutic, and support services to be identified and provided. In our experience, the services that families are rightly entitled to are difficult to obtain however. We can help you and support you through this time. Whether you choose to seek a diagnosis or not, it is a personal choice, with no right or wrong choice.
An accurate, early diagnosis may be difficult to obtain and it is always worth seeking a medical assessment from professionals who specialise in diagnosing autism. There are other conditions which are similar in presentation and we would always recommend seeking professional help.
Autistic individuals can need different levels of support depending on how they are affected. It's important to note that not all people with autism will need to live in a supported environment, many do not. The biggest area you can help with is understanding and learning from others on the spectrum. With the right support all individuals can enjoy meaningful and inclusive lives and family and friends can be supported too.
For further information on diagnosis speak to your GP or school SENCO or contact us on firstname.lastname@example.org to help support you.
It is not uncommon for autistic people to also have one or more additional conditions alongside their autism, or for other conditions to closely resemble autism, such as, but certainly not exclusively:
- Dyslexia, dyspraxia, dyscalculia, dysgraphia and learning disabilities
- ADHD/ADD (Attention Deficit with or without Hyperactivity Disorder)
- Hearing or visual impairment
- A profile of demand avoidance
- Physical disabilities
- Genetic conditions e.g. Down's Syndrome
- Gastrointestinal issues
- Type 1 diabetes
- Mental health conditions
- Obsessive Compulsive Disorder
- Hyper verbalism
- Language delay or selective mutism
- Eating disorders
These can also be referred to as co-occuring conditions. This can make everyday life incredibly complex, many parent/carers report that it is difficult to work out which condition is causing which reaction and how best to deal with this appropriately.
As parents of young autistic people (children and adults) and co-occuring conditions ourselves, we have insight into how this can impact the individual, family life, school and work, but please be assured that this diagnosis does not stop the individual from having a meaningful life.
Please note, we are not medical professionals and cannot diagnose your child. We are not affiliated in any way with services we may recommend to you.