Friday 6 March 2009

WELCOME TO MY WEBSITE.

I entered the field of autism in 2001 knowing absolutely nothing. In retrospect it was a good place to start. No preconceptions or opinions at all. I didn't even know what the word 'autism' meant.

My first care manager sat in the chair opposite and smiled. He paused for a moment. " Imagine suddenly being put in the middle of a street somewhere. You don't know where this place is. You cannot make sense of the road signs. The boards over the shops don't tell you anything. You cannot interpret the language or facial expressions of the passers by. The lights from the cars are dazzling. The surrounding sounds are all deafening. You are completely alone. How would you feel?" he asked.


"Scared, disorientated, not a part of things, paranoid", I answered.

8 YEARS LATER.


Eight years later and in some ways I know so much more. Over 40 workshops and courses. NVQ3 and NVQ 4 in Health & Social Care. NVQ Assessors Award Level 4 Award in Health & Social Care. The Registered Manager's Award in Health & Social Care. And in other ways.....I know absolutely nothing. I have listened. Talked. Laughed. Cried. Been punched and kicked senseless, (though no more so than any of my colleagues), eg. broken nose, dislocated elbow, internal bleeding....frequently covered in faeces, urine, vomit, blood, saliva and most meals that ever appeared on a menu. I have attended countless seminars, read thesis after thesis, trawled through every paper, website, documentary, newspaper.....video clips, dvds, . . . . . . . . . .just hoping to find some kind of answer. All I, (think I), know is that every person with autism is different. Every 'autism' itself...is different.
That first manager taught me a valuable lesson. Well, he taught me more than one.....but this was perhaps the most valuable...."learn the person....not the autism." "If you learn the person you'll learn his autism at the same time." Thank you Nick Stone.
And, while I'm in 'thank you' mode......John Mortlock. He lectured on my very first course. Two days passed like 2 minutes. Utterly captivating.
We sat in that Exeter hotel conference room. He surveyed us all. I was the newest recruit. He asked, "do you realise how lucky you are?"
"In 1943 the Austrian psychiatrist Dr. Leo Kanner was the first physician in the world to be identified as a child psychiatrist, founder of the first academical child psychiatry department at John Hopkins University Hospital and his first textbook, Child Psychiatry in 1935, was the first English language textbook to focus on the psychiatric problems of children. His seminal 1943 paper, "Autistic Disturbances of Affective Contact", together with the work of Hans Asperger, forms the basis of the modern study of autism". "That was just 58 years ago. In the history of time...and in the history of medicine...that is like yesterday. It is like minutes ago! You, my friends, are in at the very BEGINNING of the story of autism! It is perfectly feasible.....in fact, it is very likely...that...you may see something...hear something...or recognise something...on your very first day...about autism...that no-one else has noted yet!!" "How amazing is THAT??"
At that moment I realised that turning down that other prestigious job for one that paid only a third as much had been the best decision of my life. I have never regretted it for one second. Thank you John Mortlock. I have passed your passionate words on to countless new recruits and will continue to do so.

A IS FOR AUTISM.

This excellent 11 minute film about autism is now a 'classic.'


Just click on the link below:


http://uk.video.yahoo.com/watch/2190791?fr=yvmtf

I THINK MY CHILD HAS AUTISM.


If your child seems to be developing differently from other children you may suspect that they have a disability. If this is your first child, you may feel unsure how to tell whether your child is developing normally.

Neuro-typical, (ie. normal), child development in the early years:

Six weeks – neck muscles develop so that most babies can balance their heads a short time if they are kept still. They start smiling when they hear familiar voices and see familiar faces.

Eight to ten weeks – babies can focus better and follow moving objects with their eyes. This is the beginning of hand eye co-ordination. They start to make sounds of pleasure usually when you are playing or holding them. By ten weeks they respond to your talk with their own sounds and start practicing sounds when on their own.

Three months
– neck and shoulder muscles get stronger so that most babies can control their heads completely and will be able to roll from their backs onto their sides.
Babies begin to know one face from another and will soon prefer familiar faces to strangers’.
They will swipe at an object but will not be able to hold it yet.
From three months the language learning process becomes very clear. Babies will make a lot of babbling noises, beginning with cooing noises and then adding harder sounds.

Four to six months
– babies can work out how far away an object is and are beginning to grasp objects. At six months they grasp objects with their whole hand and use their cupped hands to scoop things up. New sounds will be added to the babbling noises.

Six - eight months
– babies are beginning to be strong enough to sit up unaided but balance will still be a problem. Some will be trying to crawl. They recognise familiar voices and by the eighth month will take an interest in adult conversation. They will have a strong bond with their main carers and get upset when you are out of sight. They can manage finger food by themselves because between seven and eight months they are making use of their fingers and thumbs for grasping and holding onto things.

Nine months to one year
– by nine months most babies will be able to sit up without difficulty, and by ten months they may stand. They will be using their hands to point and poke and make gestures such as waving. They will be able to pick up the tiniest object and eventually they will learn how to let go of objects too.
Babies understand a lot more words than they use at first. They use their first real spoken words in their tenth or eleventh month but it might be hard to spot them amongst their ‘chatting’ sounds. Babies may be more worried by strangers as they reach their first year and can become clingy with you.

One to two years – sometime during the first year babies become toddlers and will be walking independently on average between 14 and 16 months. They generally need less sleep and are very active, exploring their surroundings and learning about the different weights and textures of things. By two toddlers make great strides in understanding whether objects are the same or different from each other and will be beginning to group them in their minds.
Some children will gain enough control to come out of nappies but many children will take another year or two. Toddlers are not ready to play with other toddlers but enjoy playing alongside them. Language takes off generally at around twenty months and by two the toddler is likely to be adding second words and soon after short sentences. If your child is not talking at all by the time they are two and a half, then ask your doctor or clinic for a developmental check-up.

Three to four years - by the third year the young child will be beginning to understand abstract ideas like “soon” or “more”. Their language will expand to take in new concepts such as “heavy’ and “light”, to describe things that are not in the same room, and to explain feelings and ideas. “Why” and “what’s that?” will be their favourite phrases as they expand their vocabulary and understanding. Most children of this age talk all the time. Imaginative or ‘pretend’ play will make use of all this language. By four they will enjoy playing with other children, learning to share and take turns.


If your child has autism, finding out as quickly as possible will make it easier to get the right help for them.

Children with autism cross the ability range. Some can be gifted in different subject areas but the majority have difficulties relating to other people, many may never learn to speak and may never be independent. This wide range is called the autistic spectrum. At its most profound, people with autism may be disruptive and unpredictable and may be aggressive to others and/or themselves and their environment. They may seem to be living in a world of their own. Their lives, and those of others who care for them, particularly families, can be extremely stressful.

Children with autism have difficulties in three main areas:

  • social skills such as making friends and interacting with other people
  • communication – explaining how they feel and think including problems with speech and other ways of communicating, such as facial expressions and gestures. Some children simply do not learn to talk
  • imagination – understanding that other people have thoughts and feelings. Children with autism can be very rigid and may have fixations on different objects or topics

Children with autism always have difficulties in these three areas but they show up very differently from child to child.

Children with autism have an individual way of looking at the world. Some have particular strengths such as an ability to focus on detail and concentrate for a long while on one thing; some have a talent for learning facts and particular skills. Many have quite severe deficits in all three main areas.

Children with autism may react differently to sounds, sights, smell, touch and taste, which affects their response to these sensations. They may also have unusual sleep patterns and behaviour.

It can be hard to diagnose autism in very young children because the age at which children typically learn to walk, talk and play can vary. One child may say little until they are two and then start to speak in sentences; some children may be walking before their first birthday and others may be 18 months before they start. Children may speak late for all sorts of reasons: they may be busy learning other things such as walking; they may be twins who often develop language later; if your family is bilingual, they may be learning two languages at once. Some children may have less experience of face-to-face talk with those in immediate contact with them. Boys often learn language later than girls so remember, the stages below are just averages; most children will be quicker or slower at reaching them. If you are worried that your child is not developing in the same way as other children, ask for a check up from your doctor or clinic.

An assessment is the first step to finding out. This is a check on how your child is developing in different areas such as their social, physical and learning skills.

MY CHILD HAS BEEN DIAGNOSED WITH AUTISM.

Before and after your child has been diagnosed with autism, there will be all sorts of things that you will want to find out about and get information on. The right provision, support and education will be essential as well as involving the family. See what your nexts steps might be here.

Involving the family

Explaining the diagnosis to your family may not be easy, especially if you feel they have been critical of you as a parent.
Your child’s difficulties may already have been noticed by other members of your family. They may feel relief that you can give the difficulties a name or they may be upset and find it hard to take in. The label of autism may puzzle or upset them so try to explain it in terms of what your child can and cannot do and how you may need their help.
If you have been given leaflets or other information, show these to your family too. If you have found any websites useful, print out the information for them or suggest they look for themselves.

Grandparents, aunts and uncles can make all the difference when you are trying to cope with the different needs of brothers and sisters, especially where one or more child has a disability. They may be able to give you a break from caring so you can spend time with your partner, friends or on your own and they may be able to help with brothers and sisters who may feel pushed out because of the time you need for your child wit autism.

Whether or not you have close relatives or friends nearby, try to find a parents’ support group. Parents often say how helpful it is to talk to other parents in the same situation. Your health visitor, social worker or parent partnership service will know what is available.

NEXT STEPS.

When you first get a diagnosis for your child, it may be a shock. Sometimes it can be a relief to know but you may also feel upset, angry or confused. You may not be able to take in much at first about what this means for your child and family but later you will want to find out more to make sure you get all the help your child needs.

Get the professionals you are talking with to write down information about your child’s diagnosis for you so that you have a written record of your child’s difficulties that you can follow up later if necessary.

It will help to know:
• a clear diagnosis of your child’s difficulties
• how your child will be affected
• what you can do to help their development
• what support they will need from other services
• who to contact if you have questions in the next few weeks and months.

It may take time to get full answers to all the questions you will have but assessment of your child’s difficulties will be the first step in getting a fuller picture of their needs.

You will probably want to talk about how your child is affected now and in the future and find out more about autism and the help available.

AUTISM IN THE UK.

  • Autism now affects about one in 100 children. There are around 100,000 children with autism in the UK, with around half a million family members directly affected by the condition. 1
  • Four times as many boys as girls have autism 2

Autism and education

  • In schools with pupils with autism, only 22% of teachers have been trained specifically in autism – the majority of training given is typically one to four hours.3
  • The most recent survey found only 7,500 specialist places for over 90,000 children with autism in the UK. 4
  • One in five children with autism have been excluded from school, the majority of those on more than one occasion. 5
  • The number of autistic pupils with a statement in England has increased greatly from 23,960 in 2004 to 34,550 in 2008. Figures for the numbers of pupils on the autism spectrum on School Action Plus show a greater increase, from 7,300 in 2004 to 12,750 in 2008. 6

What this means for parents, carers and children

  • Many families with autism live in poverty as it costs on average three times more to raise a child with a severe impairment than a non-disabled child. 7
  • Parents of children with autism are more likely to split up – perhaps as many as 80%.
  • Only 11% of carers who have children with autism work full time, and 70% say the lack of appropriate care facilities stops them working. 8
  • Over 40% of children with autism have been bullied at school. 9
  • Parents of children with autism are more likely to go to Tribunal about their child’s education. 10

Costs

A cautious estimate is that autism currently costs the UK economy at least £1billion each year, the vast majority spent on lifetime care. According to a 2000 study, the average lifetime cost of autism was estimated as £2.94m. The research team stated that ‘Evidence suggests that even moderate increases in educational provision could potentially result in major savings in later living costs’. 11



Footnotes

  1. The Office of National Statistics recently reported a rate of autism of 1% in the population of school-age children. Office of National Statistics (2005), Mental health of children and young people in Great Britain, London: Palgrave Macmillan. The Medical Research Council suggested a prevalence rate of 1 in 166 children under 8, while teachers have reported numbers as high as 1 in 80. Medical Research Council (2002) Review of Autism Research: Causes and Epidemiology, MRC: London; Barnard, J. et. al. (2003), Autism in Schools: Crisis or Challenge?, NAS: London.
  2. In the ONS survey cited above, 82% of children with autism in the sample were boys.
  3. Barnard, J et. al. (2003), Autism in Schools: Crisis or Challenge?, NAS: London.
  4. Jones, G (2002), Educational Provision for Children with Autism and Asperger Syndrome: Meeting Their Needs, David Fulton Publishers: London.
  5. Batten, A et. al. (2006), Autism and Education: The Reality for Families Today, NAS: London.
  6. Autism Education Trust (2008), Education Provision for Children and Young People on the autism spectrum living in England: a review of current practice, issues and challenges, NAS: London.)
  7. Sharma, N (2003), Still Missing Out? Ending poverty and social exclusion: messages to government from families with disabled children, Barnardos: London.
  8. Broach, S et. al. (2003), Autism: Rights in Reality, NAS: London.
  9. Batten, A et. al. (2006), Autism and Education: The Reality for Families Today, NAS: London.
  10. SENDIST annual report (2007)
  11. Knapp, M. & Jarbrink, K. (2000), The Cost of Autistic Spectrum Disorder, Foundation for People with Learning Disabilities Update, 1, 7, April 2000.

SERVICES THAT CAN HELP WITH A DIAGNOSIS.

Schools

All teachers in local authority schools and government funded nurseries are expected to meet the needs of children with special educational needs often with support from a teaching assistant. The special educational needs co-ordinator (SENCO) is the teacher in a school or nursery who has responsibility for organising the support for children with special educational needs. They may not always work directly with your child, but will support other staff and link up with the local authority and parents to make sure children get the help they need. Schools may request a statutory assessment of a child’s educational needs or help you with a formal request. Reviews of individual education plans and statements of SEN will generally be organised by the SENCO who will invite parents to discuss their child’s progress with the school.

Local authority services

Local authority services for children, including education, are now combined into Children’s Services Authorities or Children’s Trusts. While professionals will be working more closely than before, they operate under different legislation and often the funding is still separate.

Early years key worker

Under the Early Support scheme, young children with complex needs and their families may be allocated a key worker or lead professional who could come from health, education or social care services. The key worker’s main roles are to provide information to you and pass it on to other professionals as necessary and to co-ordinate the help that comes from a range of services. They should act as a contact point helping you understand the system and helping you find their way through all the services including benefits, transport and education.

The key worker will take responsibility for ensuring a Family Service Plan is agreed with you and reviewed regularly. The plan is included in the Early Support Family Pack, an information pack, which is given to families of newly diagnosed disabled babies and young children. The Plan may list the services which will be provided and give details of who will do what.

Education services

Education services for children with special educational needs are provided under the Education Act 1996, (as amended). This details when your local authority should offer extra support for your child. Professionals working within education services include:

The educational psychologist (EP) generally a qualified teacher who has additional training as a psychologist. EPs assess children for learning difficulties and can suggest ways teachers can help a child with special educational needs. All local authorities have an educational psychology service but some EPs work privately.

The special educational needs officer (or Named Officer) – your contact with the local authority if your child is having a statutory assessment or already has a statement of SEN.

Parent partnership service (PPS) – every local authority has a parent partnership service which helps parents of children with special educational needs (SEN) in their dealings with schools and local authorities. Parent partnership officers will support parents whose children are having a statutory assessment leading to a statement of SEN. They may also offer parents help via an independent parental supporter, a volunteer who is trained by the PPS.

Social Services

Social services for children with disabilities and other needs are provided under theChildren Acts 1989 and 2004.
You can write to your local Social Services department to ask for an assessment of your child’s needs. Social workers can offer support and advice on services such as play schemes, parents’ groups and short breaks.
Social workers and care managers are involved in the assessment of care needs of people with disabilities and their family. They are also involved in arranging help to meet needs. If you do not have a named social worker or care manager and need urgent assistance from social services you should ask to speak to the duty social worker at your local department.

Health services

If there are concerns about a child’s mental health, it is likely that the local Child and Adolescent Mental Health Services, (CAMHS), will be involved. These services are based at the local primary care trust (the local part of the NHS, including doctors’ surgeries), and will be able to recommend counselling or other mental health services if they are needed.
Health service professionals can diagnose your child’s difficulties and/or offer help. They include:

Paediatricians who specialise in children’s health and development. They may diagnose your child with ASD and may offer support.

Psychiatrists who are often involved where there are mental health difficulties. They may diagnose your child with ASD and may offer support. They are able to prescribe medication.

Clinical psychologists help children with specific problems such as overcoming behaviour difficulties. The clinical psychologist may diagnose your child with autism and may offer support.

Health visitors are qualified nurses or midwifes with additional training in child health. They visit families at home when they have children aged between 0–5. They give advice on the care of young children, normal child development, feeding and behaviour etc. Health visitors can help you contact other health services. Some areas have specialist health visitors who have experience of children with disabilities.

Occupational therapists (OT) help children carry out everyday activities such as using a spoon and fork. They can give particular help to children with autism, for example by using methods which calm their sensory systems.

Physiotherapists focus on physical and motor development. They can assess your child for physiotherapy treatment, give advice on equipment and teach parents how to handle their child when bathing, dressing etc.

Speech and language therapists can assess speech, language and communication difficulties and carry out therapy. They often work closely with other professionals such a teachers. They can give particular help to children with autism for example, using different communication systems. Speech and language therapists are often involved in the diagnosis of ASD as part of a muti-disciplinary team, ( ie. professionals from different backgrounds – health, education or care etc – working together to support families and children). Help from a speech and language therapist on the NHS can be accessed through a referral by your GP or through the local authority when it includes it in your child's statement, (ie. a document which sets out a child’s needs, extra help and school place. The educational help on a statement must be provided by law).

Wednesday 4 March 2009

TRICIA REGAN.


Cut and paste the link below:


http://www.youtube.com/watch?v=0DR1w4LdOB8

Autism Spectrum Disorder Le Juan Richardson

Check out this SlideShare Presentation: