The Sussex Downs ADHD Information Group

 

We are a small group based in the Brighton and Hove area of Sussex, UK, though we aim not to exclude anybody, anywhere, from accessing the information we have available.

 

We would like to ensure that all those that live with, work with or teach those with AD/HD have access to information that is current, to enable to the best possible outcomes for all those concerned.

 

 

What is Attention Deficit Disorder?

Attention Deficit /Hyperactivity Disorder (AD/HD) refers to a cluster of behaviours that cause a child to underachieve at school and under-behave at home for the standard of parenting.

It is not a 'new fad', but a clearly recognisable medical condition identified in 1902 by an English doctor called George Stills. It comes from a difference in the fine tuning of the normal brain, the underlying problem thought to be a deficit in the neurotransmitters, and this has been shown using the latest scan techniques (PECT scans).

It is strongly hereditary - so many families have a parent or close relative who has similar problems. If one identical twin has AD/HD there is over a 90% chance the other will have the condition.  If one sibling has AD/HD there is about a 30% chance another child will be affected. (The chances may be increased if both parents have AD/HD).

The opinion varies on the number it affects altogether, ranging from 2% to 10% of the population. It continues throughout the school years with about 60% still having serious difficulties in adulthood - it is now known to be a life-long condition, managed well by some. Hyperactivity for example, can sometimes diminish as a person matures. But the outcomes of  AD/HD cannot be accurately predicted.

The hallmarks of AD/HD are inattention, easy distractibility and impulsivity with or without hyperactivity, causing educational and behavioural difficulties.  Sufferers without hyperactivity can be distant, dreamy and 'spaced out' whilst some remain restless and fidgety.

60% of children with AD/HD will have other co-existing conditions. Some examples are, dyslexia, language difficulties, obsessive/compulsive disorder, substance abuse, depression, tics, and oppositional defiant disorder.

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How will I know if my child has AD/HD?

AD/HD affects people in different ways and they vary in the number of the behaviours and the relative severity of each.

The disorder can often be evident in the very young with many parents remembering their AD/HD child as a baby with some or all of the following characteristics:

Extreme foetal

Excessive crying

Poor sleeping pattern

Over-active toddler

Frequent extreme temper tantrums

Poor adaptability

Fussy feeder

Developmental delays i.e:

Slow language development

Slow toilet training

Poor co-ordination

Poor social skills

Fearless and unpredictable

Accident prone

Poor sense of personal safety

Needs constant watching

However, other AD/HD children may have been ‘good’ babies and toddlers and shown no developmental concern, but symptoms will always occur before the age of seven.

Problems will often develop once the child has started school with their socially unacceptable behaviour and impulsivity causing great difficulties and disruption in the classroom.

Often they are known by all but liked by few!

The dreamy inattentive types may create no disruption but will achieve little work, and will often seem as though they are simply not paying attention.

 

Is there a link to AD/HD and learning difficulties?

Not necessarily (but just as with any other individual), ability to ‘learn’ and IQ will vary among those with AD/HD. Untreated AD/HD, however, will always seriously affect a persons ability to achieve to their full potential.  

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Criteria

The following is the medical criteria (list of symptoms) used for diagnosing AD/HD called the DSM-IV 1994. Symptoms should be noted in at least two settings (e.g.. home and school) and must cause significant difficulties with social, educational or occupational functioning.

INATTENTION

6 or more of the following symptoms of inattention for at least 6 months:

1.  Often fails to give close attention to details or makes mistakes in schoolwork, work or other activities.

2.  Often has difficulty sustaining attention in tasks or play activities.

3.  Often does not seem to listen when spoken to directly.

4.  Often does not follow through on instructions and fails to finish schoolwork, chores or duties in the workplace (not due to oppositional behaviour or failure to understand instructions).

5.  Often has difficulty organising tasks and activities.

6.  Often avoids, dislikes or is reluctant to engage in tasks that require sustained mental effort (such as schoolwork or homework).

7.  Often loses things necessary for tasks or activities (e.g. toys, school assignments, pencils, books, tools ).

8.  Is often easily distracted by extraneous stimuli.

9.  Is forgetful in daily activities.

 

HYPERACTIVITY / IMPULSIVITY

6 or more of the following symptoms of Hyperactivity and impulsivity for at least 6 months:

1.  Often fidgets with hands or feet or squirms in seat.

2.  Often leaves seat in classroom or in other situations in which remaining seated is expected.

3.  Often runs about or climbs excessively in situation in which it is inappropriate (In adults or adolescents this may be limited to feelings of restlessness).       

4.  Often has difficulty playing or engaging in leisure activities quietly.

5.  Is often 'on the go' or acts as if they are driven by a motor.

6.  Often talks excessively.

7.  Often blurts out answers before questions have been completed.

8.  Often has difficulty awaiting turn. 

9.  Often interrupts or intrudes on others (e.g. butts into conversations or games).

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When is this normal and when is it AD/HD?

There are many normal children who have some of these behaviours - sometimes.                                                                                                                                                  

There is no clear cut line between a normally active, impulsive and inattentive temperament, and true AD/HD.

However, if these behaviours are excessive and are causing the child to under function at school, to under behave at home, is perhaps creating a stressful family life and the child remains lonely, distressed or angry, they must be taken seriously.

'A problem is only a problem when it causes a  problem'

 

What can I do if I think my child has AD/HD?

You must become an 'educated consumer' - you must thoroughly understand this disorder, so learn all you can about AD/HD. There are many excellent books available on AD/HD and a support group may be able to supply fact sheets that you can copy and pass on.  Ask the child's nursery/teacher/minder to write a report on your child's difficulties, achievement levels and behaviour, and friends or family if they are willing, to do the same. Keep a record at home of events and behaviour.

If you still feel that this is indeed the problem, take along your reports and resources to your GP or school doctor, explain your concerns and discuss an appropriate referral. It is important to get a correct diagnosis by a specialist who has a thorough knowledge of this disorder.

We are far behind countries like America, Canada, Australia, and South Africa. In the UK there are far less professionals working in the area of AD/HD although things are improving all of the time. There are now many people that will be prepared to listen and refer you on. 

Be prepared to be patient, you may have to go on a waiting list for an appointment. Much of the diagnosis will depend on your evidence so always take it with you.

Parents are now realising that  much  can be done to help these children and are putting pressure on the medical profession to 'catch up' and learn how to diagnose and treat AD/HD.

Another good idea is to learn all you can about the education system. Most schools now produce detailed information sheets for parents about what it means to have a child with special educational needs. However, if you find a school that is unhelpful, contact your Local Education Authority (LEA) and ask for a copy of their Special Educational Needs policy. There is a great deal  that can be done in school to help children with behavioural difficulties, with or without AD/HD. Some LEA's even have their own guidelines on AD/HD, so it is worth contacting them. The DfES - SEN website http://www.teachernet.gov.uk/wholeschool/sen/ has a whole host of information available for parents on special educational needs and it's well worth having a look at. 

There are many GP's, Health Visitors, Special Needs Teachers and School Doctors that will be sympathetic to your problems and may even be able to offer assistance in the field of management and special coaching. But don't be too disheartened if coaching fails. AD/HD often requires specific kinds of behaviour management, and anybody that tells you that these children are just the same as any other child with 'challenging behaviour' and "Simply needs good discipline," is simply out of date.

However, there is still much that can be done once your child is diagnosed...

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What is the treatment?                                

After a careful and full assessment of the disorder by a professional with a vast knowledge in this field, managing AD/HD may involve some or all of the following:

Behavioural strategies at home

Educational strategies at school

Boosting the child's self esteem

Medication

Correct behaviour modification techniques can be invaluable in assisting children with AD/HD. They thrive on order, routine, stability, structure, and consistency.  It is important that teachers and carers design a program that is followed by ALL.

Limiting distractions, working to only short term goals, immediate reward systems and implementing only immediate sanctions are all useful tools.

Medication will help redress the balance in the brain, and it is extremely well researched and proven. For many, once the correct dosage has been administered, the benefits can be quite miraculous. More detailed information on medication is available from a specialist or  support group.

Parents must ensure that they learn all they can about the treatments available. Well informed and knowledgeable parents produce the best possible outcome for their children.

Remember, untreated AD/HD is not without its hazards.

 

Focus on early treatment

Time is against children with AD/HD! It is a real condition whose importance is only recently becoming understood. When misdiagnosed and mistreated, it can cause stress and long term damage to family relationships. These children will under function at school and start to believe that they are stupid or naughty. Perhaps they will be excluded from school, later getting into trouble with the police? Maybe none of these will happen; perhaps they simply end up a long way behind academically.  Eventually though, they will have little self-worth.

The outcome for AD/HD sufferers does not have to be a completely bleak one, many are very successful people with much drive and ambition.  

But the possibility should not be ignored.

The percentage of children in care with AD/HD is high. We cannot see what the future holds for any child, the future for a child with AD/HD is even more cloudy.

AD/HD is a real, neurological condition. It cannot be cured, but with appropriate treatment and understanding, we can maintain the enthusiasm to learn, protect self-esteem and aid better family relationships.

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