We're marking Neurodiversity Celebration Week by showcasing the work of the trust's Autism Experience Group - providing useful information and insight into neurodiversity.
Neurodiversity is a term used to describe a variation in normal human evolution which means some people think different to others. Neurodiverse conditions include autism, attention deficit hyperactivity disorder (ADHD), dyslexia, dyspraxia, tourette syndrome and complex tic disorders.
Jorik Mol leads Oxford Health’s Autism Experience Group, and is himself autistic. This Neurodiversity Celebration Week the group chose to share their experiences of autism and how it can intersect mental health challenges in their collaboration “Autism and…”.
To find out more about the Autism Experience Group for adults with a diagnosis of autism email firstname.lastname@example.org.
Jorik said: “All autistic people are different. That’s obvious, all of us are different. But autism doesn’t always occur alone. Autism is often diagnosed alongside other conditions.The tendency is that autistic people are far more likely than all others to experience mental health issues. Most of us suffer with anxiety. Eating disorders affect us far more than non-autistic people.
“That means that there is no one-size-fits-all approach that works for all of us.
“This week we choose to celebrate our differences and to recognise our very different difficulties. The Autism Experience Group has shared stories about how their autism intersects with their mental health, their neurology and their identity.
“If you have questions or you or someone you know is autistic and would like to be involved in our Autism Experience Group for adults with a diagnosis, please get in touch. Let’s connect. Autistically.”
Anxiety disorders are very common amongst people on the autism spectrum. Roughly 40 per cent have symptoms of at least one anxiety disorder at any time, compared with up to 15 per cent in the general population.
Jorik said: “Anxiety disorder is sometimes diagnosed on top of the expected anxiety that comes with simply being autistic. In the autism experience group, all members experience anxiety on a very regular basis, with or without an additional diagnosis.”
It is estimated that at least 20 per cent of the population will experience a period of depression at some point but it is even more common in people on the autism spectrum. People who are depressed can experience a range of symptoms which vary from person to person in their combination, and can be mild or severe.
Jorik said: “It may be especially hard for depressed people on the autism spectrum to seek help because they might find change daunting and anxiety-provoking, feel worried that they will be blamed, or feel unsure about how to describe their symptoms. Anxiety and depression can also make people more generally introverted, withdrawn and isolated. All people with depression may have difficulty sharing their thoughts and feelings. But because people with autism can have difficulty labelling their feelings, it can be especially hard to communicate symptoms or concerns.”
Obsessive compulsive disorder (OCD)
OCD is an anxiety disorder. If someone has OCD, it means that they experience repetitive thoughts and behaviours that are upsetting to them. OCD occurs in about two to three per cent of people who are not autistic and is more common in people who are autistic.
Anorexia Nervosa is a severe eating disorder that affects women and men. Autistic women are much more likely to develop anorexia than non-autistic women. The factors that drive anorexia may be different in autistic people.
Anorexia has the worst outcomes of any mental health condition with 1 in 5 people with dying early, mostly due to starvation or suicide.
Bulemia nervosa is a separate eating disorder but the symptoms are often mixed with anorexia.
Research shows that anorexia in autism is caused by:
- high levels of anxiety
- rigid, rule-driven eating and exercising behaviour
- sensory problems with food
- difficulties sensing hunger
Many people on the autism spectrum have difficulty processing everyday sensory information. Any of the senses may be over- or under-sensitive, or both, at different times. These sensory differences can affect behaviour, and can have a profound effect on a person’s life. Here we help you to understand autism, the person and how to help. You can also find out about synaesthesia, therapies and equipment.
Sometimes an autistic person may behave in a way that you wouldn’t immediately link to sensory sensitivities. A person who struggles to deal with everyday sensory information can experience sensory overload, or information overload. Too much information can cause stress, anxiety, and possibly physical pain. This can result in withdrawal, challenging behaviour or meltdown.
A member of the Autism Experience Group shared: “When I was a child, I had no idea that my sensory perception was different. There are pictures of my mother walking me around a fairground in a pram, my hands clasped against my ears. The noise was too much. But I never learnt that the way I experienced sound was different to other people’s, and if it was, it was “Oh, he’s just overly sensitive.”
“The language used always made me feel like I could have chosen to be less sensitive and, through selfish reasons, I had chosen not to be. It wasn’t until I was in my twenties that I was able to understand that I had been living in a tidal wave. The world was unbearable. Additionally, my sensory sensitivity differs day by day. The worst days are when I’m tired. I cannot handle noise, bright lights, intense smells and I struggle with being touched. Even clothes can be too much to handle.
“Our sensory needs are both the most serious and the least understood hurdle for us to participate in everyday life. Places like gyms, supermarkets and even the streets we live in can be unbearable. This is why we need a deeper understanding of how this works, as well as deeper understanding in wider society. Our sensory issues are closely aligned with our mental health, as well with how others treat us.”
Repetitive behaviours and stimming — self stimulatory behaviour
‘Stimming’ is short for ‘self-stimulatory behaviour’. This means that somebody is doing something to give themselves ‘sensory input’ – but is stimming harmful or harmless?
A person with autism can stim on almost anything; it just needs to be something that appeals to them. However, common areas include:
Visual. Staring at lights; doing things to make the vision flicker such as repetitive blinking or shaking fingers in front of the eyes; staring at spinning objects.
Auditory. Listening to the same song or noise, for instance rewinding to hear the same few notes over and over. Making vocal sounds, tapping ears, snapping fingers etc.
Tactile. Rubbing the skin with hands or with another object, scratching.
Taste/smell. Sniffing objects or people; licking or chewing on things, often things that aren’t edible. Pica can overlap with stimming.
Verbal. Echolalia, basically: repeating sounds, words or phrases without any obvious regard for their meaning.
Proprioception. This means the body’s ability to feel where it is and what it’s doing; it’s often a sensation that autism can dull. Hence, a lot of stimming involves things like rocking, swinging, jumping, pacing, running, tiptoeing or spinning – all of which give the body’s sense of balance and position a boost.
Jorik said: “Give autistic people the chance to stim. They’re doing it to function in your world. They’re doing their best, even if you think they are acting selfishly.
Published: 13 May 2019