Neurodiversity Affirming Glossary of Key Words – for families and professionals

(Glossary written & and originally published for THE PDA SPACE SUMMIT 2023 )

A full version of The Neurdodiversity Affirming Glossary is now available on Amazon.

This blog is an abbreviated version created for The PDA Space.

Language Matters

It can be really hard as a parent/carer when you discover that your children are different and struggling more than others around them. They may have been diagnosed as being Autistic, ADHD, PDA Profile, Dyslexic, Sensory Processing Disorder or something different or any combination of these, or you may be exploring and trying to identify their needs (or possibly your own too!).

It can feel overwhelming and confusing, it is like entering a new world. You may be reaching out for support online but then discovering a whole new language and vocabulary that you have not come across before and aren’t sure what key words may mean or be cautious about saying things ‘wrong’.

As professionals, language and terminology is also tricky to keep up to date with. It is important to reflect neurodiversity-affirming, identity first language in your practice and when writing reports to families whilst taking into consideration and respecting individual preferences and how people personally identify.

I hope that this short glossary will provide a guide to some of the more common key terms That you may come across when navigating education and healthcare pathways for your child.

Glossary

(more information is available in the booklet available on Amazon)

Glossary

Attention Deficit Hyperactivity Disorder (ADHD): a difference in neurology affecting attention, thinking, processing and impulse.

Alexithymia: difficulties identifying, understanding and expressing your emotions or those of others.

Autism: – a difference in neurology which means you experience and respond to the world differently to non-autistic people. Differences include:- social interaction, communication and sensory processing. Autistic needs are fluid and will change depending on the impact of the environment and other people.

Autistic Burnout – a period of intense sensory, social, emotional and physical overwhelm which results in exhaustion and difficulties with executive functioning, memory, attention, and a change of capacity to communicate and regulate sensory input. It is brought on by long periods of unmet needs. Autistic burnout can lead to anxiety, depression and other mental health difficulties.

Dyscalculia: difficulties related to understanding numbers and difficulties with maths.

Dysgraphia: difficulties with writing skills and letter formation, can affect spelling and word choice (other fine motor skills may be efficient).

Dyslexia: a specific learning disability that means you have significant difficulties with reading, writing and spelling.

Dyspraxia: difficulties with balance and coordination. It can also affect planning and processing of motor tasks.

Echolalia: repeating back something said to you

Ehlers-Danlos Syndrome (EDS): a group of inherited conditions that affect the joints and connective tissues.

Executive functioning: skills that include the ability to manage yourself, plan, organise and carry out tasks to meet a goal (eg washing, dressing, cooking, organising & carrying out work)

Hypersensitivity – a more intense / heightened response to sensory stimuli, to the point it could feel painful or very uncomfortable (e.g., light/sound/taste/taste/touch /smell/movement).

Hyposensitivity – a lower response to sensory stimuli, to the point of being unaware for some people (e.g., light /sound/taste/touch/smell/movement).

Info-dumping: a term often used to describe an autistic person sharing their deep knowledge and enthusiasm of their special interests.

Interoception – relates to a person’s ability to understand and interpret internal body signals and sensations. If you have difficulties with interoceptive awareness then you may not know if you are hungry, thirsty, hot, cold, need the toilet or are in pain.

Masking -the act of consciously or unconsciously suppressing authentic autistic identity and needs in an attempt to fit into the social norms of the people around you. Masking is detrimental to mental health over a long period of time.

Meltdown (sensory / social overload) a response to experiencing more social/sensory input that a person can manage. It can look similar to a ‘tantrum’ or ‘losing control’. If an autistic person is experiencing a meltdown they will need time to rest, regulate and recover in a way that is right for them.

Neurodiversity refers to the diversity of the human brain and recognises everybody’s differences. It is a scientific fact that everyone is different, just like it is a scientific fact that all plants and flowers are different and that there is biodiversity.

Neurodivergent: describes a person who processes, thinks, and responds to the world in a way that is different (diverges) from the majority / neurotypical. Some people may describe themselves as multiply neurodivergent, e.g., Autistic, ADHD and OCD.

Neurodiversity Paradigm: is a perspective that understands, accepts and embraces the differences of everyone. Within this theory, it is believed there is no single ‘right’ or ‘normal’ neurotype, just as there is no single ‘right’ or normal gender or race. It rejects the medical model of seeing differences as deficits. It also recognises the same dynamics and inequalities that occur in society with social, cultural, racial and gender inequalities are also seen in those that are neurodivergent, (see Nick Walker’s work, 2021 for further info).

Neurodiversity Movement: social justice movement driving forward the ethos of the neurodiversity paradigm working for equality and inclusion for everyone.

Neurotypical: often used to describe people that are not neurodivergent, however the idea that there is a ‘typical’ brain is debated. It can also refer to the neuro-majority of people.

Neurodiversity-affirming: promoting and valuing the ideas behind the neurodiversity paradigm and embracing inclusivity

PDA: Pathological demand avoidance or Pervasive Drive for Autonomy (PDA): is widely understood to be a profile of autism, “involving the avoidance of everyday demands and the use of social strategies as part of this avoidance. PDA individuals share autistic characteristics and also have many of the ‘key features’ of a PDA profile”. (PDA Society definition).

Proprioception: also called kinaesthesia, is the body’s ability to sense and understand its location, movements, and actions.

Rejection Sensitive Dysphoria (RSD): refers to an intense emotional response related to actual or perceived rejection and heightened sensitivity to criticism/ any negative reaction.

Sensory Overload: the feeling of overwhelm after sensory input, which outweighs what the mind and body are capable of processing at that moment. It can lead to what is also described as meltdowns and shutdowns and takes time to recover from.

Sensory avoidance: intentionally withdrawing from sensory experiences that don’t make the person feel good or gives them discomfort/pain.

Sensory seeking: intentionally searching out sensory experiences that make the person feel good

Situational mutism: a person’s inability to produce speech in certain contexts.

Shutdown is a response to stress, sensory, social, or communication overload that may result in a person’s inability to communicate, engage in activities, or complete executive function tasks. The senses may be heightened or lowered.

Special interest: an all-consuming hyper focus for an autistic person that can bring great joy within a monotropic flow state (single channel of thought, which is a natural state for an autistic mind). Engaging in special interests provides opportunities for autistic people to regulate, gain deep knowledge or skills in a certain activity/topic and can be a good opportunity to socialise and communicate with others who may share the same interest.

Stimming: repetitive sensory-seeking behaviours and activities that help to regulate the mind and body.

Tics: repetitive muscle movements that result in sudden and body movements or sensory vocalisations.

Tourette’s Syndrome: ‘a condition that causes a person to make involuntary sounds and movements called tics’ (NHS).

This glossary is not comprehensive but has hopefully provided you with an overview of some key vocabulary you may encounter.

My booklet: Neurodiversity Affirming Glossary of Key Vocabulary, available on Amazon, has more information and signposting.

References and Signposting

www.aucademy.co.uk

www.autism.org.uk

www.autisticparentsuk.org

www.amase.org.uk

www.bdadyslexia.org.uk

www.ehlers-danlos.org/what-is-eds

www.kelly-mahler.com

www.neuroqueer.com

www.nhs.uk/condition

www.ocdaction.org.uk

www.pdasociety.org.uk

www.thepdaspace.com

www.sedsconnective.org

www.spectrumgaming.net

www.thrivingautistic.org

www.youngminds.org.uk

Epic Autism Resources – Autism Affirming Padlet hosted by Spectrum Gaming

www.padlet.com/spectrumgaming/epic-autism-resources

A full version of this neurodiversity-affirming glossary of keywords you may come across in the neurodivergent community and a useful list explaining common abbreviations was available as a FREE E-BOOK for all attendees of The PDA SPACE SUMMIT 2023.