What is DANDA?

DANDA (Developmental Adult Neuro-Diversity Association) has been set up for people with Dyspraxia, Asperger’s Syndrome, AD(H)D and other related conditions such as Dyslexia and Dyscalculia. It is run by adults with one or more of these conditions, thus following the Madrid declaration of 2002, which stated that organisations should be run by their users. (“Nothing about us without us”)

DANDA has grown out of the Dyspraxia Foundation Adult Support Group, as it became clear that most people with dyspraxia who contacted the group did not have this condition alone. Most, in fact, had AD(H)D, Asperger’s Syndrome or dyslexia as well. It appeared that this was the norm rather than the exception. More and more people wanted to know more about the other conditions they had, especially those with Asperger’s and ADHD. Many dyspraxics in fact joined groups for adults with Asperger’s Syndrome, but none of these are run by Asperger’s adults themselves, and there are no AD(H)D groups in the UK for adults alone. However, Dyspraxia will remain one of the main priorities, as we are the only group catering for the needs of all adults with this condition.

For a complete explanation please click this link About DANDA

What is Neuro-Diversity?

(Draft discussion document)

Neuro-Diversity is a complex phenomenon. Its causes, implications and management are still not fully understood.

History of Neuro-Diversity

Terminology:

The term Neuro-Diversity was first coined in the USA in the nineties on a computer list for people with Autism and Asperger's Syndrome and Internet searches on the term tend to direct you to sites dealing with these conditions. It was also used by dyslexics on one of their lists in the USA. Unlike most names for 'medical' conditions, it was not chosen by the professionals. However, many have now adopted it.

Definitions and Explanations:

Neuro-Diversity refers to the spectrum of neurological profiles describing how effective an individual is in processing information. This information comes in many forms, including written and spoken language, sounds, visual images, light, temperature, touch, texture and taste - as well as movement and co-ordination signals from the brain. The processing of all these things includes not only receiving and interpreting, but also transmitting, concentrating on and storing information. For most people, i.e., the Neuro-Typical (NT), the cognitive profile is relatively smooth, with little variation in effectiveness of information processing. This is in line with their general level of intellectual and reasoning ability.

In contrast, a minority of people, i.e. the Neuro-Diverse (NDs), have a cognitive profile, which shows many peaks and troughs, denoting significant disparity between the best and worst of their information processing (NB This is different from the case of having a uniform low level of performance throughout). The processing differences are present from birth, and are independent of any basic physical malfunctions, for example, of eyes, ears or limbs. It is thought that 10% of the population are significantly ND, with many more having some degree of neuro-divergence.

Put simply, ND people have had a condition from birth, which gives them difficulties in some basic skills areas, which cannot be explained by any physical disability or by their level of intellectual or reasoning ability. Specific Learning Difficulties and the, possibly more preferred term, Multi-Specific Processing Difficulties, are other ways of describing these problems.

NDs are more likely to be 'extreme machines' than NTs, that is, they are either brilliant or useless at things and rarely mediocre. They may, on occasion, appear to be average at some tasks. However, this may be due to brilliance at one aspect being cancelled out by being useless at another aspect of the same activity.

The rules of easy and difficult tend not to work for NDs, and in many cases are actually reversed. For some, complex mathematical analysis is 'a walk in the park', whereas an actual walk in the park (if they have to cross a busy road to get there and then cannot find the exit, when they remember that they should have been somewhere else half an hour ago, and the temperature is too hot for them to cope with) can be a nightmare.

What conditions does Neuro-Diversity include?

The conditions currently considered part of neuro-divergence are Dyspraxia, Dyslexia, Dyscalculia, AD(H)D, Asperger's Syndrome and Tourette's Syndrome, as well as other conditions such as Semantic Pragmatic Disorder and Oppositional Defiant Disorder (ODD).

Neuro-Diversity is often linked to enthusiasm, creativity, originality, lateral 'outside the box' thinking and the ability to take the strategic perspective (Skills desperately needed within the workplace). Attention/concentration control problems can have a positive flip-side in terms of hyper-focusing (i.e. being totally absorbed and preoccupied) and not knowing when to give up.

Many of the world's innovators are NDs, who have found their niche. This may well be a combination of original thinking coupled with hyper-focusing resulting in achieving what may well have been considered impossible and even madness to attempt. The series Great Britons was peppered with NDs such as Churchill and Newton. NDs also make a very significant contribution in terms of art and drama. Because of having to deal with their condition, many NDs are hard working, determined and compassionate.

The world would be a poorer place if we were all NTs, as it would be if we were all NDs. The skills and talents of many NDs are complemented nicely by the organisation, implementation and multi-tasking skills that many NTs have.

What problems can be caused by lack of Awareness?

The following issues are the result of a lack of awareness of Neuro-Diversity as opposed to being part of ND. The sooner the associated conditions are diagnosed and people given the necessary support and opportunities, the more likely it will be that they can lead fulfilled lives.

Many NDs, even as adults, are not aware of the condition, let alone that they have it. There is a very low level of awareness among the medical profession in relation to adults.

They may also have got themselves into a pattern (consciously or unconsciously) of masking or over-compensating for their difficulties from birth and may find it hard to be assertive.

As a result of having to deal with their conditions in a world not willing to accommodate them, the ND can have mental health problems, including anxiety, depression and low self-esteem, and some can end up with drug/alcohol abuse, which may also mask their condition.

Many have problems realising their, often considerable, potential (The workplace is designed around the needs/features of the Neuro-Typical, e.g. open plan offices without screens to reduce distractions, and an expectation of organisational/administrative skills and an ability to multi-task).

Manifestations of Neuro-Diversity:

The following list of manifestations is offered as a 'first stab'. It is hoped that future versions of this will be available on the DANDA website and included in leaflets. Please let us know if there is anything you consider misleading or missing.

•  Intolerance of certain foods

•  Allergies

•  Eczema

•  Asthma

•  Glue Ear

Irritable bowel syndrome Direct Manifestations:

Not everyone has all of the following problems and some NDs can excel in some of these areas. The ND often finds the tasks of daily life such as reading, writing, driving, household chores, cooking, grooming and organising personal finances difficult. Coping with work and other people can also be hard. There are usually a combination of problems including:

Perception - receiving and interpreting of information from the senses:

•  Difficulties with reading and spelling.

•  Difficulties interpreting visual images, tracking and relocating from one place to another

•  Difficulties with numbers, arithmetic and geometry

•  Often only able to interpret language literally and thus trouble with metaphors

•  General and/or specific over (or under) sensitivity to light, touch, taste, pain and sound

•  Trouble judging time, distance, space and speed

Communication - Transmitting information to others:

•  Difficulty constructing communication in your head

•  Problems planning and writing essays and sequencing of ideas

•  Problems being succinct or giving sufficient information.

•  Brain working at a greater speed than mouth or hand, e.g. handwriting and typing - the hands can't keep up with the brain

•  Speaking too loudly or softly

•  Not having control of pitch and tone

•  Difficulties with pronunciation

Gross and Fine Motor Skills - Transmitting brain signals to effect movement:

•  Problems with team sports

•  Tendency to bump into things

•  Poor hand-eye co-ordination

•  Slow and/or untidy hand-writing

•  Difficulties with craftwork

•  Problems with driving

•  Tendency to drop things ("butterfingers")

•  Involuntary movements (e.g. tics)

•  Failure to limit motion to the intended part of the body (e.g. hips gyrate when hand whisking)

Memory - Storage of information (exacerbates problems with other information processing):

•  Problems following instructions

•  Problems remembering sequences

•  Problems following discussion, especially in a group

•  Short-term memory problems/forgetfulness

•  Difficulties with concentration/attention control - can find it hard to concentrate or hard not to hyper-focus (be totally absorbed/preoccupied)

•  Poor spelling

Organisational Skills:

•  Difficulty prioritising

•  Poor time management

•  Problems with planning

•  Problems with delegating

•  Ineffective multi-tasking

•  Untidy (self and environment)

Social Skills/Behavioural Problems:

•  Timidity/aggressiveness, due to lack of confidence and self esteem

•  Communicating misleading body language

•  Problems interpreting body language of others

Difficulty working out the unwritten 'rules' in work or a social setting 

How can I join DANDA?

Please find a printable membership form by clicking this link: Membership

Where can I talk to others with conditions similar to my own?

To find out more information please click this link: Groups

What is Aspergers Syndrome?

Asperger’s Syndrome was named after Dr Hans Asperger, a Viennese paediatrician who described it in a 1944 paper. It remained mostly unknown to the English speaking world, until it was picked up by Lorna Wing in an influential review and series of case reports in 1981. “Asperger’s Syndrome” was made “official” in 1994 when it was included in the DSM manual used by psychologists to classify mental conditions.

Current thinking places Asperger’s Syndrome on the “autistic spectrum”. It is believed that individuals with Asperger’s Syndrome tend to have an IQ ranging from average to genius, and there is much speculation that the likes of Albert Einstein and many other philosophers, scientists and genius musicians had Asperger’s Syndrome.

The main characteristics of Asperger’s Syndrome are often (but not always) a deep focus on a specialist subject or area, a difficulty in understanding human interactions and human social codes (almost like being an alien trying to understand a strange species) and a difficulty with changing environments which need to be learned and adjusted to.

People with Asperger's Syndrome tend to have a normal to high intelligence, often coupled with a special skill or ability (e.g. extraordinary mathematical or linguistic abilities).

In addition, people with Asperger’s Syndrome are sometimes hypersensitive to stimuli such as light, noise and pain, and their motor skills may be less developed than the norm (e.g. they tend to play less sports).

Many of them are partially face-blind (have a problem remembering faces). They have to invest a lot of energy in understanding interactions and would often need to consciously plan their social behaviour in advance, including when they walk down a busy pedestrian road, and have to avoid running into people.

That intuition – the innate ability to translate human body-language and non-verbal cues is simply not there for them. People with Asperger Syndrome often describe their experience as that of “being on the wrong planet”. They have to learn how humans interact and simulate it. It isn’t a natural trait for them as it is for everyone else.

Asperger’s Syndrome is characterised by a neuro-biological difference from the norm, which means Aspergians process information differently. This is an important point to understand. Asperger’s Syndrome is not a mental illness or a disorder: it is simply a neurological variation from the norm. It is inherited genetically and very often will run in families.

Sourced and adapted from the Asprgia website: An alternative, positive, and sometimes comic view of Asperger’s http://www.aspergia.com/

What is AD(H)D?

ADD stands for ‘Attention Deficit Disorder’ and is sometimes called AD(H)D, when the presence of hyperactivity is particularly strong. The main difficulties of a person with ADD lie with concentration, short term memory, impulsive behaviour and becoming distracted. ADD develops at birth and can not be acquired later on as in the case of acquired dyspraxia.

ADD symptoms

Until recently it was believed that ADD symptoms largely disappeared in adolescence. It is now known that many symptoms continue into adulthood for up to 80% of individuals with ADD. Adults with ADD experience problems at work and in relationships. They may also exhibit other emotional difficulties. Medications such as psycho-stimulants can be an effective intervention with adults with ADD.

The major symptoms of ADD are -

1. Inattention, when a person appears easily distractible, has difficulty concentrating, procrastinates when starting tasks or has trouble finishing them (often wrongly construed as laziness), has problems listening to and following instructions, often daydreams or wanders around;

2. Impulsiveness, when sufferers act without thinking, have difficulty waiting turn in queues, move from one unfinished task to another, call out or make remarks inappropriate to the situation, or rush into tasks without thinking;

3. Over-activity, where a person seems ‘motor-driven’, fidgety, restless, tapping feet or drumming fingers, or engages in non-task related activities, and is often accident-prone;

4. Disorganisation, such as losing books or toys, forgetting homework, meetings or papers, tools and pens are lost, or instructions not acted on;

5. Social skill deficits, when people appear immature, lack awareness and sensitivity to those around them, demand attention, are aggressive, argumentative or over-react to minor problems.

useful links for ADD / ADHD:

Addiss http://www.addiss.co.uk/

Adders http://www.adders.org/

What is Autism?

useful links for autism:
National Autistic Society http://www.nas.org.uk/

What is Dyscalculia?

Dyscalculia or developmental dyscalculia is a disability that is present from childhood and is not acquired later on. Difficulties lie in dealing with numbers and mathematics. Problems include number conceptualisation, understanding number relationships and outcomes of numerical or spatial operations.

Difficulties of Dyscalculia

Spatial and visualisation difficulties:

· Difficulties in understanding calendars and reading clocks and geometry.
· Unable to keep track of time.
· Poor at recalling schedules and sequences of past or future events.
· Poor name/face retrieval.

Difficulties in mathematics:

· Poor at grasping and remembering maths formulas and basic addition, subtraction, multiplication and division.
· Forgetting where you are in a calculation.
· Failing to carry a number through to the next part of the calculation.
· Poor with financial planning or budgeting, money and credit.
· Fear of money and cash transactions.
· Difficulty in balancing a cheque book.
· Short term, rather than long term financial thinking.
· Difficulty in calculating change received from a purchase.

Numerical difficulties:

· Making common mistakes of number additions, substitutions, transpositions, omissions and reversals.
· Difficulty keeping score during games.
· Difficulty remembering one’s own telephone number.
· Difficulty in recognising phone numbers when said in a different way.

What is Dyslexia?

Translated from the Greek, Dyslexia literally means ‘a difficulty with words’. A neurological abnormality in the dyslexic person causes problems in dealing with language and learning to read, write and spell. Dyslexia develops from childhood, but it is also possible to acquire it later on. Dyslexics often make up for their poor language skills by excellent intellectual abilities in other areas.


General Difficulties of the Dyslexic:

· Discrepancy between general abilities and language skills.
· Reading difficulties of varying extent and reduced speed at reading.
· Organisational difficulties.
· Poor short term memory.
· A ‘quick forgetter’ rather than a ‘slow learner’.
· Persistent spelling errors (Dysorthographia).

Difficulties with study and work:

· Difficulties in reading accuracy.
· Need to re-read text for comprehension.
· Difficulty taking notes in lectures.
· Difficulty recalling telephone numbers.
· Disorganisation in reporting or presenting material at meetings.

useful links for Dyslexia:

Dyslexia Works http://www.bdadyslexia.org.uk/

What is Dyspraxia?

Dyspraxia literally comes from two Greek Words “dys” meaning ill or abnormal and “praxis”, which means doing. This is a negative and self-fulfilling label that implies that we are not capable of taking action.

There are two types of dyspraxia, which are quite different: Developmental dyspraxia and acquired dyspraxia. Developmental dyspraxia is when someone is born with dyspraxia, and acquired dyspraxia can be caused by a stroke or head injury and produces much more severe disabilities. This website is about the former type of dyspraxia, which includes difficulties with co-ordination, spatial awareness, perception, language and short term memory.

Other terms for Dyspraxia:
Developmental co-ordination disorder (DCD), Motor learning difficulties, Motor dysfunction, Disorder of attention - motor control and perception (DAMP).

The terms ‘Clumsy Child Syndrome’ and ‘Minimal Brain Damage’ are now discouraged. Unfortunately some people, including professionals, do not understand what you mean unless the former insulting label is used. All labels used suggest the medical model of disability, and not the everyday problems the dyspraxic person faces from the barriers in society, such as social exclusion, unemployment, underachievement in education and low self-esteem.

Sourced and adapted from the Dyspraxia Adults Action (Dyspraxia Manchester) website: http://www.daa.colsal.org.uk/

What is Tourette's Syndrome?

Tourette’s Syndrome is a hereditary disorder that develops from childhood. The main characteristics are involuntary motor (body) tics or twitches and vocal tics. The tics may be controlled to a certain degree by the person before they reach adolescence.

Common symptoms - motor tics

· eye blinking or rolling
· shaking of the head
· shoulder shrugging
· squinting
· nose-twitching
· lip smacking
· tongue-thrusting
· twitches of the mouth

Common symptoms - vocal tics

· sniffing
· throat clearing
· grunting
· spitting
· swearing (known as coprolalia)
· stammering
· hissing
· shouting

Difficulties associated with Tourette’s Syndrome

· Non-neurological inability to carry out an action, such as reading.
· Prone to moodiness.
· May over-react in certain situations.
· Difficulties with impulsivity, compulsions and obsessions .
· Defiant behaviour to those in authority.

Related link http://www.tourettesyndrome.net/

Other links

Resources to help people with neuro-diversity http://www.key4learning.com/

For people with neuro-diversity at University http://www.brainhe.com/ http://www.achieveability.org.uk/

An Aspies personal Asperger's page http://www.bearsac.com/aspergers.htm
People First - User-led learning difficulties campaining organisation http://www.peoplefirstltd.com/

For people with SPLD http://www.dyscovery.co.uk/

Disability Rights Commission http://www.drc-gb.org/