Memorandum submitted by Autism Consultancy
Services
INTRODUCTION
Autism Consultancy Services is a worldwide organisation
that was set up in 1990 by Richard Exley, Richard set up his own
company as he saw and witnessed firsthand a distinct lack of appropriate
and specific services based around Autistic Spectrum Disorder.
Throughout this paper there are several references to the approaches
and interventions used within Autistic Spectrum Disorder range
but that does not mean that either I as Richard Exley and/or Autism
Consultancy Services endorses or supports the approaches mentioned.
Over the years the remit for Autism Consultancy Services has changed
considerably due to demand in the field and also continuing rising
opportunities for Richard to be involved in both from a practical,
legislative/advisory and supportive model. Primarily but not exclusively
Autism Consultancy Services has four arms:
— I am a licensed trainer (City and
Guilds 7407) and Richard has built and developed training packages
that he hopes to get accredited in the future. Richard was one
of the first people with Asperger's syndrome in the UK and Europe
to talk on and away from his personal experiences and has lectured
all over the world including to the Australian parliament in 2002.
My work takes me all over the world as I lecturer at different
places, schools, colleges, work places, parliaments etc Until
2003 Richard was also involved with the Distance Learning Courses
on autism which are run through the University of Birmingham.
What made Richard's work unique being male is
that across the Autistic Spectrum Disorder range it is felt by
some colleagues that there are more males with a high functioning
Autistic Spectrum Disorder hence 9:1 for people with a high functioning
autistic disorder and 4:1 for more the classic cases of Autistic
Spectrum Disorder and back in 1990 there were very few people
with any form of an Autistic Spectrum Disorder on the international
circuit namely Temple Grandin (USA), Donna Williams (Australia)
and Jerry Newport (USA) and I was one of the first in the UK/Europe
to set up a worldwide consultancy service solely for Autistic
Spectrum Disorder.
— I am also a registered carer and
currently support over one hundred people with Autistic Spectrum
Disorder across the age and ability range including fifty on a
regular basis through a befriending scheme and a worldwide supported
employment project including using my contacts in the business
world, I also run and manage two social groups both link in with
other organisations like sexual health clinics, employment agencies/employers,
sport clubs, youth clubs and amateur dramatic societies etc
I am also a Named Person for children with Special
Educational Needs especially with an interest in those with an
Autistic Spectrum Disorder this has now been extended to being
an expert witness in tribunals and courts. I also run the world's
only advocacy (self, group citizen etc,) service for people with
Autistic Spectrum Disorder which is both online and in person
as well as having an active role in ensuring that Autistic Spectrum
Disorder is in the public eye of policymakers and legislators
including with colleagues in the European Union, United Nations
and the World Health Organisation.
— I am also a Trustee to four charities;
I am helping other organisations become charities and companies
which are limited by guarantee. For existing charities I act as
an advisor on issues such as providing them with the latest research,
good practice guidelines from the Charity Commission and Companies
House etc as well as helping in key areas such as fundraising
where I have helped organise events. I am also a governor for
two schools near to where I live.
I also sit on a number of working groups representing
the Autistic Spectrum Disorder angle either professionally and/or
as an advocate/champion for those with Autistic Spectrum Disorder
who may find attending/participating at meetings difficult. I
am also a regular attendee of the All Party Parliamentary Group
on Autism meetings and have been since the inception in February
2000.
— Finally I am a researcher into Autistic
Spectrum Disorder, primarily I look at the day to day issues and
how people with Autistic Spectrum Disorder can contribute and
participate in a society that still does not recognise or understand
the true complexities and extent of Autistic Spectrum Disorder.
I am involved with a number of projects including conducting research
into a number of things around an Autistic Spectrum Disorder and
I have strong/ongoing links with students, universities/colleges,
professionals, research scientists etc all over the world. That
said I do not wish or have any personal involvement as a participant
of any research despite being in regular contact with an increasing
number of researchers/scientists well including those linked with
the Medical Research Council, the Institute of Psychiatry and
the Royal Colleges etc.
My current and latest research explored a small
group of people with Autistic Spectrum Disorder through a year
looking at the issues around "reasonable access" as
defined by the Disability Discrimination Act (1995) and the possible
places where people with Autistic Spectrum Disorder may go at
different times of the year and was diarised each day by each
person writing how they got on but looking at stress, triggers
and how service providers (large and small) coped with the Autistic
Spectrum Disorder and how service providers made reasonable adjustments
and access for people with an Autistic Spectrum Disorder as well
as exploring the training needs of different service providers.
When I contacted the Chief Executive of the
Disability Rights Commission (Bob Niven), the Minister for the
Disabled (Anne McGuire) and the All Party Parliamentary Group
on Autism with an offer to present them my findings/outcomes I
was told "my research is unnecessary, irrelevant and bias"
I have written to Tony Blair and David Blunkett as Secretary of
State for Work and Pensions and to date I have not had a reply
or an acknowledgement, as for David Blunkett I even arranged for
my letter to be typed in Braille and offered to send a cassette/CD
with the letter dictated.
Before I start, Autism Consultancy Services
believes we need to be more specific a) what a Special Educational
Need is and b) what a disability is. Autism Consultancy Services
believes that a Special Educational Need is a barrier to learning.
The wide range of strategies employed by the skilled staff in
a number of our schools is often insufficient to overcome such
barriers. As for a disability Autism Consultancy Services believes
this is "a physical or mental impairment which has a substantial
and long-term adverse effect on his ability to carry out normal
day-to-day activities" which is shared with the Disability
Discrimination Act (1995).
That said we must recognise there are different
types of disabilities including physical, sensory, developmental,
cognitive, psychiatric, and health-related. However Autism Consultancy
Services believes that we need to go the extra mile in looking
at the a) social understanding which underpins the problems for
many people with an Autistic Spectrum Disorder and b) exploring
the sensory needs of the person with an Autistic Spectrum Disorder,
sensory being that they are either hypo and/or hyper to the five
senses of smell, touch, taste, sight and hearing, but each sense
must be seen as an individual sense for example as someone may
have good visual skills may have poor auditory skills etc which
are often neglected and ignored particularly when the definition
of Autistic Spectrum Disorders and disability through the Disability
Discrimination Act (1995). does not address this either.
Autism Consultancy Services is unique in that
I have spent many years working with colleagues from a variety
of disciplines and backgrounds including working with the Royal
Institute of British Architects, interior designers and town planners
etc looking at the individual and complex sensory needs of people
with Autistic Spectrum Disorder when designing and building new
schools and hospitals etc as well as helping improve existing
buildings to cater for those with an Autistic Spectrum Disorder
by addressing the issues of flooring, ceilings, lighting, colour
schemes etc
The general description for an Autistic Spectrum
Disorder are present from birth or very early in development and
affect essential human behaviours such as social interaction,
the ability to communicate ideas and feelings, imagination, and
the development of relationships with others furthermore Autistic
Spectrum Disorder is referred to as a spectrum disorder because
there are a range of symptoms and characteristics that present
themselves in different ways. Within the autistic spectrum there
are different subgroups namely Asperger's syndrome, high functioning
autism, Rett Syndrome, Childhood Disintegrative Disorder etc.
That said many people who either don't live
and/or work with people with an Autistic Spectrum Disorder understand
what social understanding means. Therefore to extend and reinforce
my argument I have tried to summarise in that social understanding
is, it is a knowledge of social aspects of the human condition,
how they have evolved over time, the variations that occur in
differing physical environments and cultural settings, and the
emerging trends that appear likely to shape the future.
As Gray (1994) says "We must approach the
"social impairment within an Autistic Spectrum Disorder"
as a shared impairment by working to improve social understanding
from both sides of the social equation." A way to address
the social understanding deficit is through Social Stories (Gray
1993)—which is a social story is a story written according
to specific guidelines to describe a situation in terms of relevant
cues and common responses (Gray & Garand, 1993).
The underlying philosophy stresses the importance
of "abandoning all assumptions"—to seek to understand
the person's perspective, to ensure a student has the social information
he/she needs, and to present information so it is accessible and
easily understood. As a result, every social story has a reassuring,
accepting quality—positively and matter of fact describing
a specific event (Gray et al, 1993; Gray & Jonker et al, 1994).
Experience indicates social stories are often effective with mid
to higher functioning students from preschool to adult.
1. (a) Are we properly identifying children
with SEN?
Following extensive interviews (phone, email,
1:1 etc) with people on the mailing list of Autism Consultancy
Services the outcome showed a clear no. Children/young people
with an Autistic Spectrum Disorder are not being recognised and/or
identified correctly and accurately, where identification does
take place it remains ad hoc. There has become a trend for one
size fits all through a framework for diagnosis that is 25-years-old
hence based on the Triad of Impairment (Gould and Wing 1979).
Wing and Gould acknowledged that there were many children who
did not exactly fit Kanner's description of `early childhood autism
but who nevertheless had significant social difficulties.
However, such framework is misleading in that
what constitutes an Autistic Spectrum Disorder varies from person
to person and furthermore the framework precludes the sensory
differences in that their senses can be either hyper or hypo and
each sense is unique and how information is processed is unique
as well as being unique for every person, and if you read Kanner's
original paper you would clearly be able to recognise the sensory
difficulties for each person. Once again the example I used earlier
comes back into play in that someone can have good visual/spatial
skills/awareness but yet have very poor auditory skills and as
a result their senses become distorted due to the inability of
separation.
Another child may have fairly good auditory,
verbal and visual skills but may have problems in smell and taste
in that their food needs to be prepared and cooked a certain way
and then eaten in a further way—my Norwegian colleagues
Karl Reichelt and Ann Marie Knivsberg have been involved in researching
this area for many years and have worked beyond the gluten/casein
free diets that many children/young people with an Autistic Spectrum
Disorder have undertaken. Another child may have problems differentiating
between sweet and sour foods etc or a child may have problems
with hard floors, certain lights, aftershaves/perfumes or unable
to block out sunlight and when the clocks go forward/back can
have no bearing too even with thick curtains across the window
etc.
Some people with an Autistic Spectrum Disorder
also have irrational fears/phobias like paraskevidekatriaphobia,
(fear of Friday 13th) the number eight (including the past tense
of the word eat), the washing machine etc—it could be perceived
that people with an Autistic Spectrum Disorder are perceived as
being social phobic and/or agoraphobic and become so anxious that
they experience panic attacks, which are intense and unexpected
bursts of terror accompanied by physical symptoms including self
harm and mutilation.
Remember that an Autistic Spectrum Disorder
is often described as a "hidden or invisible disability"
in that is isn't always noticeable, recognisable or identifiable
at first hand but that does not mean it or parts of it don't exist.
Some people with an Autistic Spectrum Disorder become obsessive
and repetitive behaviour can intermingle with each other of course
these can be separate but sometimes the repetitive behaviour can
become an obsession. Obsessions can be things like watching the
same video/DVD over and over and over again or collecting pieces
of paper, stones, shoelaces, seashells, pictures of animals, logo's,
vehicles, specific characters, hand-flapping, spinning etc Yet
some people with an Autistic Spectrum Disorder may seem unaware
of physical pain, heat, or cold and unable to differentiate between
boiled water from the kettle and hot water from the tap.
As regards pain things like bruises and grazes
don't always appear on the skin until a while later, as for things
like scabs they may appear but a child with an Autistic Spectrum
Disorder may tend to pick at them until they bleed or release
pus and remain unaware of the risk of spreading of germs, infection
and contamination and yet may have a fear of needles, furthermore
most people with an Autistic Spectrum Disorder have very soft
and supple skin. That said even when the subject of germs is being
discussed in general or specific terms it has been noted that
some children with Autistic Spectrum Disorder can inadvertently
develop a form of Obsessive Compulsive Disorder (OCD) including
excessive hand washing and can make their hands sore and bleed
or develop eczema, dermatitis and other skin problems.
All in all there is no one test for Autistic
Spectrum Disorder when a child is born (it is also undetectable
in the womb) such as testing saliva, urine, blood etc The Triad
of Impairments is based on an assessment of core behaviours, history
taking and observation in several settings. Yet the issues that
I have just mentioned are often explored after the diagnosis which
can vary on where you live in who gives the diagnosis in terms
if it is a multi disciplinary team as set out by the National
Initiative for Assessment and Screening in Autism (NIASA) report
through the National Autism Plan for Children (Baird et al 2003)
as many people are using and interpreting the guidelines ad hoc
and this is causing unnecessary confusion and anger for many parents
etc
Parental information may be supplemented by
standardised observational measures such as the Autism Diagnostic
Observational Schedule (ADOS; Lord et al, 1999). Various checklists
are also available, including:
— Childhood Autism Disorder Rating
Scale (Schopler et al, 1986)
— Autism Disorder Behaviour Checklist
(Krug et al, 1980)
— An Autism Screening Questionnaire,
which is derived from the ADI-R (Berument et al, 1999).
Autistic Spectrum Disorder is firmly on the
increase and it is not just here in the UK either, as to why this
is debated and whether it is better assessment/diagnosis, greater
awareness etc is unclear. The numbers are startling, and we need
to devote more resources to determining what is going on. The
latest estimated figures from the National Autistic Society for
children are below:
People with learning disabilities (IQ
under 70)
(Note 1: Almost all of these people
will require a high level of support throughout their lives)
|
Children
| Kanner's | Other Spectrum Disorders
|
|
| 6,700 | 20,000
|
| Total | 26700 |
|
| |
|
People with average or high ability (IQ 70 or above).
(Note 2: Many, perhaps most of these people, will
become semi or fully independent as adults but need understanding
and help as children)
|
Children | Asperger's syndrome
| Other Spectrum Disorders |
|
| 48, 100 |
46,700 |
| Total | 94,800 |
|
| Overall Total | 121,500 |
|
| |
|
Below is a table that provides the prevalence rates for Autistic
Spectrum Disorder:
People with Learning Disabilities (IQ under 70)
| Approximate Rates per 10,000 |
|
Kanner's syndrome | 5
|
| Other spectrum disorders | 15
|
| Total | 20 |
| People with average or high ability (IQ 70 or above)
| |
| Asperger's syndrome | 36 |
| Other spectrum disorders | 35
|
| Total | 71 |
| Possible total prevalence rate of all autistic spectrum disorders
| 91 |
| |
— Remember children with Autistic Spectrum Disorder
become adults with an Autistic Spectrum Disorder; Figures have
been corrected to the nearest 100.
There are no sharp boundaries separating `typical' autism
from other autistic disorders, including Asperger's syndrome.
therefore going upon the figures I have just quoted are based
upon the 2001 census and could potentially mean about 1:86 has
an Autistic Spectrum Disorder and that could mean more people
than with a physical disability, learning disability, sensory
(blindness, deafness etc) disability and Autistic Spectrum Disorder
is found across all races, cultures, creeds and nationalities.
1. (b) and doing so early enough?
Autism Consultancy Services believes this is clearly not
the case. Early intervention is imperative. Early intervention
refers to offering an Autistic Spectrum Disorder specific intervention
at the earliest age possible. It is about applying a structured
approach to the education of children with an Autistic Spectrum
Disorder. Children who receive educational intervention before
the age of four years have shown to significantly improve their
chances of learning new skills and adapting to their environment,
when compared with children who begin intervention at a later
age. However what makes the argument more problematic is that
it still remains comparatively rare for a child to receive a diagnosis
of Autistic Spectrum Disorder prior to their fourth birthday even
though the signs may be there but undetected or recognised, which
can cause a dilemma for parents/carers through early intervention
as by the child reaches their fourth birthday a child will have
already gained or developed a number of skills and competences.
Research indicates that intervention should commence as soon
as possible after diagnosis (Clunies-Ross, 1988), that early intervention
prevents declines in intellectual development (Guralnick, 1998)
and that early intervention leads to improvements in most areas
of deficit in autism (Smith, 1999; Birnbauer and Leach, 1993;
Jocelyn, Casiro, et al, 1998). One-on-one intensive intervention
is the ideal teaching setting for children with an Autistic Spectrum
Disorder. The needs and skills of children vary considerably,
and no one program/method/approach will fit every child and trying
to place a proverbial square peg into a round hole is unadvisable
and not recommended as of the long term and adverse damage in
most areas of development including adulthood which can lead to
problems with anti social behaviour, the prison service/criminal
justice system etc.
This does not have or necessarily mean an approach such as
Applied Behavioural Analysis (ABA) or the Earlybird (Shields,
1999) or Help programmes offered by the National Autistic Society.
There are many approaches for Autistic Spectrum Disorder
and research shows no one program being more effective than the
other as each child must and needs to be seen as an individual
throughout their life especially during their education, education
is for life for people with an Autistic Spectrum Disorder, as
Segar (1997) believes that "Autistic people have to understand
scientifically what non-autistic people already understand instinctively."
or "the best key to overcoming autism is understanding it"
The difficulty and frequent dilemma is what to do and how
long to do it as whilst Autistic Spectrum Disorder is not diagnosed
prior to two years (except in rare circumstances) but often children
are diagnosed anything from four years up. Additionally a lot
is happening in or minds and bodies prior to that age and parents
and educators could be causing inadvertent problems by going through
a process that can be traumatic, emotional and distressing, guilt
ridden for all the family problems such as long term mental health
and self esteem problems could be impending and it is often a
case of the chicken and the egg in which comes first.
However with the correct/appropriate help including accurate,
ongoing training on Autistic Spectrum Disorder (and not just a
one day awareness course either) for all professionals that the
child will come into contact with, no matter how small is imperative
including professions like secretaries, caretakers, auxiliary
personnel etc Whilst the Children Act encompassed with Every Child
Matters (2003) through the autism exemplar talks about multi agency
working, a common assessment framework, a common core of skills
and knowledge, a workplace reform and professional development.
Regrettably these key areas are still not happening in many
local authorities due to a number of reasons including trying
to agree responsibility of where autism is in whether it is a
learning disability or mental health disorder despite people with
an Autistic Spectrum Disorder can have one or the other or in
some cases both or some authorities see the word guideline and
therefore feel it is not applicable to them as an authority.
The nervous system of a person with an Autistic Spectrum
Disorder does not work in a balanced way and is under stress as
it is more sensitive to sight, sounds, movement and touch than
the nervous system of a person without an Autistic Spectrum Disorder.
The bombardment of sensory information throughout the day means
a person with an Autistic Spectrum Disorder is easily overwhelmed
and this can result in challenging behaviour at school or after
school when the child gets home. Furthermore when people with
an Autistic Spectrum Disorder feel stressed, very tired, ill or
worried, minor changes can be upsetting to them and cause tearfulness,
anger or distress. It can be like this all of time for a person
with an Autistic Spectrum Disorder hence their needs for routine
and predictability.
Challenging behaviours are exacerbated by crowds, heat, noise,
fatigue, illness, sensory overload and medication. A person with
an Autistic Spectrum Disorder finds other people unpredictable
as they can not always understand what is meant or what others
expect of them, daily events can be uncertain and unpredictable.
Change is difficult as the pragmatic use of memory experiences
are compromised which makes it difficult to be adaptable and to
anticipate what will happen. Challenging behaviour is those children
who display behaviour of such intensity or frequency or duration
that the physical safety of the child or those nearby is put at
risk. That said "difficult or challenging behaviour is not
a part of an Autistic Spectrum Disorder, but it is a common reaction
of pupils with these disorders, faced with a confusing world and
with limited abilities to communicate their frustrations or control
other people". (Jordan and Jones 1998).
In all the literature I have read, the words `challenging
behaviour' and `communication' difficulties seem to run together
(Clements and Zarkowska 2000, Cumine et al 2000, Howlin 1998,
Jordan and Powell 1999, O'Brien 1998, Smith Myles and Simpson
1998, Waterhouse 2000,). Whether it is an inability to process
the verbal and non-verbal information given or an inability on
the individual's part with an Autistic Spectrum Disorder to verbalise
their needs or frustrations, both play an important part in the
resulting challenging behaviour displayed.
Before being able to address challenging behaviour there
is a need to identify and observe behaviour patterns taking note
of specific details and behaviours when they occur, how often
they occur, what level of communication is adopted and the resulting
outcome ie the challenging behaviour displayed and how it is dealt
with. Different methods of recording observations include ABC—Antecedent,
Behaviour Consequence (Cumine et al 2000) STAR—Settings,
Triggers, Actions, Results (Zarkowska and Clements 1994) TOAD—Talking
out of turn, Out of seat behaviour, Attention seeking ,Disruptive
behaviour (Wragg 1994. cited O'Brien 1998).
Observation encourages the observer to be analytical and reflective
about everything they do, how they do it and note everything they
say and how they say it, the manner of their voice, the words
used (O'Brien 1998). Whichever method of recording is used, the
outcome of the resulting analysis should lead to implementation
of appropriate strategies to help with the individuals challenging
behaviour.
There is a need to ensure carers and professionals are consistent
in giving simple and concise instructions, in most cases using
the child's name so they are aware the instructions include them.
Metaphors, colloquialisms and slang are difficult for the child
with an Autistic Spectrum Disorder to understand. In some displays
of challenging behaviour the individual with Autistic Spectrum
Disorder can resort to shouting, screaming, hitting, pinching
or kicking. It is important that staff work together and is consistent
with the language they use to address any outburst of challenging
behaviour within the classroom, including normal verbal and non-verbal
language.
Social stories, Social Scripts and SOCCSS—Situation,
Options, Consequences, Choices, Strategies, Simulation (Smith
Myles and Simpson 1998) have been proven to help with social interaction
of children with an Autistic Spectrum Disorder. All of these depend
on having adults structure their behaviour through stories, pictures
or role play and using effective communication skills verbal or
non-verbal to improve what was a difficult situation/concept for
the child to understand.
The repetition of the stories and the sameness being of paramount
importance to the child. Once a difficult situation has been identified,
social stories can be developed to explain and show the child
how to behave next time to attempt to alleviate the challenging
behaviour displayed. It is important that the stories are not
presented when the challenging behaviour is occurring. The child
needs to be reminded of the situation at calm moments of the day
(Attwood 1998, Clements and Zarkowska 2000, Gray 1995 cited Howlin
1998).
For the child with an Autistic Spectrum Disorder a failure
to develop the in-built mechanism, apparent in most children,
of communication in general and verbal language results in an
inability to function as well as others. It may present itself
as a complete failure to learn to speak or use gestures or alternatively
as an acquisition of words or gestures/signs but not used in a
communicative way. For some children this can lead to displays
of what others may see as challenging behaviour (Clements and
Zarkowska 2000). Although some children with Autistic Spectrum
Disorder are non-verbal, this does not mean they are non-communicative.
Communication for a child with autism may present itself in many
different ways. Many attempts to communicate may be construed
as behavioural problems and may not always be socially acceptable
and what they are attempting to communicate may prove difficult
to determine.
The introduction of the Picture Exchange Communication System
or the Treatment and Education of Autistic and related Communication
Handicapped Children programme for a non-verbal or verbal child
with an Autistic Spectrum Disorder can assist communication and
help alleviate some of the possible frustrations associated with
challenging behaviour (Clements and Zarkowska 2000, Cumine at
al 2000, Jordan and Jones 1999, Jordan and Powell 1998, Powell
and Jordan 1997,).
The Picture Exchange Communication System provides a tool
for early communication by offering an opportunity to quickly
develop `real spontaneous communication' (Cumine et al 2000, Jordan
and Jones 1999) and the Treatment and Education of Autistic and
related Communication Handicapped Children programme helps to
introduce routine and stability to what can be, for many children
with an Autistic Spectrum Disorder with hyper sense sensitivity,
a very confusing and over stimulating classroom situation (Cumine
et al 2000). It sets out to provide visual information, structure
and predictability.
Children/young people with a high functioning Autistic Spectrum
Disorder or Asperger's syndrome (which are not the same condition
as felt by the members on the Autism Consultancy Services database)
often have average or above average intelligence based on IQ and
this is causing a whole range of problems across all areas of
society from education, health, welfare support and financial
support/assistance (through the Department for Work and Pensions
and the Benefits Agency) often such people may have good intelligence
but still lack, appreciate and understand their own and other
people's usage of skills/concepts in that they are very literal,
have little appreciation of abstract concepts etc.
For example children with an Autistic Spectrum Disorder can
have little sense of danger, self help skills—cooking, cleaning,
understanding the concept of money, differentiating between hot
and cold, unable to feel/describe when in pain generalisation,
problem solving, planning, executive functioning including skills,
transferring from one situation to another (including theory into
practice) and due to the impairment in imagination as described
by Wing a child with an Autistic Spectrum Disorder may get confused
when something like the school hall that can be used for PE and
also for eating his lunch etc
Play for children with an Autistic Spectrum Disorder is also
impaired as well as being a crucial area of development; play
is a diverse and complex behaviour that is viewed as central to
the normal development of children (Jordan and Libby, 1997). However,
it is very difficult to come to a concise definition of what is
meant by play. Dictionaries vary in the definitions they offer,
most, however, seem to imply some kind of fun, a way of entertaining
oneself. Garvey (1977) expands on this, listing play as having
the following characteristics: Below are two short lists that
lists some of the strengths and weaknesses and neither list is
meant to be exhaustive.
— Play is pleasurable and enjoyable.
— Play has no goal imposed on it from the outside.
— Play is spontaneous and voluntary.
— Play involves some active engagement on the part
of the player.
— Play has certain systematic relations to what
is not play. It can be contrasted to non-play.
A child's play goes through a number of developmental stages
(Boucher, 1999):
— Exploratory and manipulative play
— Physical play including rough and tumble
— Pretend (make-believe) play.
It is sometimes suggested that there are two types of pretend
play. So, for example, Libby et al (1998) differentiates functional
play (eg pushing a toy car along the carpet and making a brmmmm
noise) from symbolic play, which involves treating an object or
situation as if it is something else (eg pretending a banana is
a telephone).
In Libby et al study, children with an Autistic Spectrum
Disorder did not demonstrate significantly less functional play
than children with Down syndrome or young children with typical
development. Children with an Autistic Spectrum Disorder did however,
have difficulties in the production of symbolic play although
there was evidence of some capacity to engage in symbolic play,
albeit mainly object substitution. Not all researchers make the
distinction between symbolic and functional play.
A child with an Autistic Spectrum Disorder will rarely be
perceived as the playing child (Beyer and Gammeltoft, 2000) and
their play can be impaired at all developmental stages. Most research,
however, has concentrated on pretence, especially symbolic play.
Research has shown that for young children with an Autistic Spectrum
Disorder, sensory motor play dominates beyond the verbal mental
age, at which it normally declines in infants without an Autistic
Spectrum Disorder (Jordan and Libby, 1997). Further, having missed
out the early experiences of manipulation and combination enjoyed
by children without an Autistic Spectrum Disorder, toys and objects
are used in an inflexible way.
For example, a child with an Autistic Spectrum Disorder may
be preoccupied with spinning the wheels on a toy car, rather than
playing a racing or driving game. Roeyers and van Berckelaer-Onnes
(1994) describe children with an Autistic Spectrum Disorder as
missing the curiosity of typically developing children. Roeyers
and van Berckelaer-Onnes concluded that children with an Autistic
Spectrum Disorder play behaviour is often limited to simple manipulation,
the quality of their play is lower than that of non-autistic children
of comparable mental age and (spontaneous) symbolic play is usually
absent or impaired.
Some children with an Autistic Spectrum Disorder do not give
any indication that they want to play with other children, preferring
to play by themselves; other children would like to but they can
have great difficulty in indicating this wish. All have difficulty
in getting the other children to play with them. Jarrold, Boucher
and Smith (1996) found that not only are children with an Autistic
Spectrum Disorder impaired in their production of spontaneous
pretend play, but that they also spend significantly less of their
time compared with controls in functional play (eg making a doll
walk). They argue that the finding that children with an Autistic
Spectrum Disorder show impaired levels of functional play is a
problem for Leslie's metarepresentational account (Leslie, 1987)
because functional play does not require metarepresentational
abilities, but is nevertheless impaired.
Similarly, Williams, Reddy and Costell (2001) found that
in contrast to matched controls (children with Down Syndrome and
typically developing children), children with an Autistic Spectrum
Disorder did not normally engage in elaborate functional play
(eg stirring a spoon in a pot). Instead their play consisted of
simple functional play (eg placing a spoon in a pot but not stirring
it). The control groups divided their time equally between these
two types of play. Children with an Autistic Spectrum Disorder
also produced fewer different acts and spent less of their play
time in functional play that was new, when compared with the control
groups.
In summary the play of children with an Autistic Spectrum
Disorder can, therefore, be seen as impoverished. As Sherratt
(1999) postulates, the difficulty that children with an Autistic
Spectrum Disorder experience in pretend play arises from difficulties
they have in both the fluid organisation of thought processes
and in communicating these thoughts to others. Further, disturbance
of play in a child with an Autistic Spectrum Disorder may lead
directly to disturbance in all aspects of development (Jordan
and Libby, 1997) although it could be that an inflexibility of
thought processes causes an impairment in play and also an impaired
development of other skills (Sherratt, 2001a). Sherratt and Peter
(2002) suggest that teaching children with an Autistic Spectrum
Disorder to play may increase a fluidity of thought and reduce
conceptual fragmentation. In particular, if play is taught to
young children it may assist them in reducing repetitive and rigid
behavioural patterns and encourage communication development.
It is also a good idea to recognise in line with current
educational psychological research that children with an Autistic
Spectrum Disorder will benefit from formal training in "executive
functional skills" ie specific skills like thinking and remembering
effectively and basic skills such as sequencing events and understanding
timetables. That said it has not been determined what exactly
constitutes executive functions it could include:
— Working memory (holding information in mind while
doing something else, and then being able to act upon that information)
— Organisation (categorisation, management of items
in space and time)
— Prospective memory (remembering to remember)
— Follow-through (remembering to do)
— Arousal (control of mood, focus and energy)
— Activation (getting started)
— Sustaining alertness and effort
— Behavioural inhibition (stopping oneself before
or during an activity)
— Inhibiting verbal and non-verbal responding
— Cognitive flexibility (assessing options, dealing
with ambiguity, shifting perspectives)
— Quickly retrieving and analyzing information
— Sequencing (thinking sequential steps through)
— Self monitoring (being aware of one's thoughts,
feelings and behaviour, and the impact of that behaviour on others)
Subsequently those who have problems in executive functioning
likely have problems in important areas of life functioning includes:
— Getting started on boring and mundane tasks (procrastinating)
— Remember what one has to do (out of sight and
mind)
— Underestimating time to complete tasks.
— Awareness of time, and passage of time
— Handling frustrating situations
— Offending others by being unaware of socially
appropriate behaviour in given context
— Frustrating others by interrupting, taking over,
completing sentences, and being impatient
— Handling negative emotions (acting on emotions
like anger, when calming down is more beneficial)
— Being attentive in boring or slow moving situations)
— Thinking through the potential consequences of
actions before acting
— Completing long-term projects
— Finishing the last parts of a project, which are
tedious and relatively unrewarding
— Jumping into new exciting, creative activities
which are not well thought out
For a number of people with an Autistic Spectrum Disorder
and their families/carers the lists above will be identifiable
as people with an Autistic Spectrum Disorder have significant
problems and differences within executive functioning. The frontal
and prefrontal regions of the brain are most involved in behavioural
inhibition other executive functions. It is the outer surface
of the front of the brain, behind the forehead and eyes. There
is typically lower metabolic activity and regional cerebral blood
flow in this area when someone is showing problems with executive
functioning.
Strengths often seen in Autistic Spectrum Disorder
— Construction tasks eg puzzles
— Rote memory—good at remembering things that
other people have forgotten
— Adherence to activity routines
— Ability to process visual displays
— Splinter skills eg artistic or musical talent.
— Aware of sounds that others cannot hear
— A loner (and happy to be so)
— Observant of details that others might not see
— Humorous in a unique way
Weaknesses seen in Autistic Spectrum Disorder:
— Understanding intention of others.
— Knowledge of social convention and interpersonal
interactions.
— Ability to express emotions in conventional manner.
— Overwhelmed by sensory stimulation.
— Difficulty with change.
— Tolerating specific sounds
— Explaining thoughts through speech
All in all Autism Consultancy Services is not against inclusion
and integration—but we believe it needs to be done correctly
over time, reviewed and methodically as one size does not fit
all, children and young people with an Autistic Spectrum Disorder
have very specific/individual, profound, complex and varied needs
and when doing your washing you wouldn't place your colours within
your whites and therefore children/young people with an Autistic
Spectrum Disorder need specialist environments that are unique
to the individual.
Furthermore as a result of the lack of joined up thinking
and planning and the continued ignorance and arrogance towards
Autistic Spectrum Disorder including false perceptions that an
Autistic Spectrum Disorder is a psychiatric, mental health or
personality disorder, it can only affect children, children who
may withdraw into a world of their own and all people with an
Autistic Spectrum Disorder are extraordinarily talented/gifted
in music, science, arts, maths etc Parents are using the legal
system more and more through the courts, tribunals and other hearings
against professionals and the local authorities and being scrutinised
unnecessarily for conditions such as Munchausen's Syndrome by
Proxy.
Munchausen's Syndrome by Proxy "is a condition manifest
by persons feigning or inducing illness in themselves for no other
apparent gain than adopting the sick role and thus exposing themselves
to painful and sometimes damaging and disfiguring medical procedure.
The perpetrator is often a parent and typically the mother. However,
there have been cases where the father acts as perpetrator. Perpetrators
show an avid interest for hospital care and usually have experience
in the medical field; Munchausen's syndrome is present in 10%
of such perpetrators.
Munchausen's Syndrome by Proxy is a sort of enigma—which
brings me to my original purpose; a quest for the truth about
Munchausen's Syndrome by Proxy. The most important question for
me being: what causes Munchausen's Syndrome by Proxy? It is a
disturbing disorder, which is closely tied to behaviour and, on
the surface, loosely connected to the brain. No concrete psychological
or neurological data exists on the causes of child abuse.
Most theories on the causes of child abuse point to past
abuse, family dysfunction and depression—the same symptoms
existing in Munchausen's Syndrome by Proxy perpetrators. However,
it seems far too simple to write off Munchausen's Syndrome by
Proxy as child abuse and ignore the psychological components of
the syndrome, such as the perpetrator assuming the role of a sick
individual by proxy.
Information on Munchausen's Syndrome by Proxy is unanimous
on several basic points: the identification, symptoms of the perpetrator
and consensus (more or less) that is at least, a form of child
abuse. The vast black hole of diagnosis, treatment for the perpetrator
and victim and concrete warning signs poses a great risk to the
victims. The perpetrators are not overtly inadequate caretakers,
but in fact the very opposite. Furthermore, coupled with their
ability to deceive and lie to obtain their desired ends creates
difficulty in diagnosing Munchausen's Syndrome by Proxy for doctors.
The perpetrator is most likely deeply caught in their psychological,
internal experience, while the child suffers through physical,
external experience.
1. (c) Do we need categorisation of disability?
The fact is yes we do the sooner the better. A person with
an Autistic Spectrum Disorder can have normal or above normal
intelligence, but have serious deficits in the areas of communication
and social interaction. Testing of cognitive abilities is difficult
in light of the communication and social impairments. There can
be tremendous differences among people with an Autistic Spectrum
Disorder. Furthermore once again when we do our washing we don't
put our colours in with our whites and vice versa as we have little
or no idea on how things might come out and we can't afford to
take a chance in case the damage is irreversible or irreparable.
The measured intelligence of individuals with this disorder
ranges from "IQs" of less than 70 to more than 130.
Those who carry a diagnosis of an Autistic Spectrum Disorder,
but not mental retardation, can still experience significant learning
problems and will benefit from accommodations in the classroom
or in testing situations. Neurological research is just beginning
to document the exact nature of an Autistic Spectrum Disorder.
Certain cell groups in the brains of children and young people
with an Autistic Spectrum Disorder are abnormal in size or proportion,
causing problems in sensory perception and linking information
from the various parts of the nervous system.
Children and young people with an Autistic Spectrum Disorder
may not see the "big picture," or recognise all of the
cues in their environment. Some studies have shown that children
with an Autistic Spectrum Disorder process auditory information
and respond to visual stimulation at different rates. For such
learners, their environment appears like a motion picture with
the sound track running at the wrong speed. The most difficult
problems deal with the child's inability to recognise and respond
to the behaviour and communication of others.
There are several educational model programs designed for
children with an Autistic Spectrum Disorder, eg Picture Exchange
Communication System), Higashi, Applied Behavioural Analysis),
SPELL, (Structure, Positive, Empathetic, Low Links), Auditory
Integration Training and Sensory Integration Therapy etc each
of which may be tailored to the needs of the child. One example
is the Treatment and Education of Autistic and Related Communication
Handicapped Children. The Treatment and Education of Autistic
and Related Communication Handicapped Children program which offers
structured teaching in a centre-based and community-based setting.
The Treatment and Education of Autistic and Related Communication
Handicapped Children Model, like many other programs designed
for students with an Autistic Spectrum Disorder, utilizes clearly
defined work areas, visual schedules to provide organisation,
and visual prompts to sequence steps in a task.
There are other treatment options and programs available
to individuals with an Autistic Spectrum Disorder, medical and
dietary interventions are discussed elsewhere. It is important
to remember that no one option or program will fully educate children
with an Autistic Spectrum Disorder. Intervention must be based
on the strengths and challenges of each individual and it should
combine selected components from a variety of intervention models.
What makes understanding an Autistic Spectrum Disorder so
difficult, and consequently and Autistic Spectrum Disorder research
and practice so compelling, is the wide-ranging complexity of
the disorder. Autistic Spectrum Disorder practices will need to
be considered under a holistic approach. Everyone with Autistic
Spectrum Disorder is different and unique and will undoubtedly
change as one ages and is exposed to ever-changing biological
and environmental influences.
In addition, the classical psychological diagnosis of an
Autistic Spectrum Disorder is a description of associated behaviours,
which though quite useful may hide the fact that several different
causes could have an outwardly similar manifestation of symptoms.
An Autistic Spectrum Disorder is also unique in that the related
research also exists on spectrum, from "basic" (medical
and biological) science to "applied" (behavioural, communication,
educational, etc.) science and everything in between.
It could be argued that the educational needs of children
with Statements of Special Educational Needs are laid out in Section
two of the Statement of Special Educational Needs and are therefore
known to the Local Education Authorities and Autism Consultancy
Services argues that the Statement of Special Educational Needs
is drawn up by the Local Educational Authorities from evidence
submitted and is selective. This view is borne out of the fact
the bulk of the ongoing work that Autism Consultancy Services
provides is trying to get the Statement of Special Educational
Needs correct from the child's point of view via the parental
submission to the statements and the parent's unique and invaluable
knowledge of their own child.
This localised position is backed up by the increasing numbers
of parents nationwide who are compelled to take their Local Educational
Authority to the Special Educational Needs Tribunal (which back
in 2000 was around 18% of the 2100 or so cases per annum are being
brought by parents of children/young people with an Autistic Spectrum
Disorder). Furthermore it is also evident there are issues around
inclusion which do not seem to find a place on statements, for
example there is a reluctance on the Local Education Authorities
part to address in detail problems around transport, the detailed
specification of speech and language therapy or occupational therapy
in section 3b of the statement (on the basis they are health matters)
and such matters for the child at unstructured times.
Many children/young people with a diagnosis of high functioning
Autistic Spectrum Disorder and/or Asperger's syndrome miss out
significantly due to their intelligence being average or above
average and when their prognosis is presumed better and will achieve.
Whilst this is true it is imperative to recognise that just because
someone appears more articulate doesn't necessarily mean they
are in that some children with a high functioning diagnosis will
become like Jekyll and Hyde in that they will hide and conceal
their problems at school but at home will become distressed which
often has a bearing on the whole family including the child's
siblings and even extended family.
People with a high functioning Autistic Spectrum Disorder
usually have fewer problems with language than those with a classic
Autistic Spectrum Disorder, often speaking fluently, though their
words can sometimes sound formal or stilted. Once again problems
such as planning, transferring skills from one situation to another
(including theory into practice) appreciating another's needs
and views, have stereotyped behaviour, unable to separate fact
from fiction and vice versa, a co-morbid diagnosis such as Attention
Deficit (Hyperactivity) Disorder or that they have macrocephelus
(a larger than normal head size), or epilepsy etc.
Additionally many children/young people with a high functioning
Autistic Spectrum Disorder will be left out in team games both
through the National Curriculum and break time and left out once
more when they reach adolescence when peers start to take an interest
in sexual/relationship related matters and as some people with
a high functioning Autistic Spectrum Disorder are aware of their
difficulties it has been noted that some contemplate suicide or
self harm.
It needs to be noted that approximately 20%-30% of children/
young people with an Autistic Spectrum Disorder have epilepsy
which is particularly prone around adolescence and puberty.
Furthermore it is unknown how many people with Autistic Spectrum
Disorder also have AD(H)D as a dual diagnosis including diagnoses
like Down syndrome or Scotopic Sensitivity Syndrome, Landau Kleffner
Syndrome, irritable bowel syndrome, Prader-Willi Syndrome. People
with an Autistic Spectrum Disorder do not have a personality disorder
such as manic depression, schizophrenia and linking the two together
is unnecessary and a dangerous combination in terms of assessment
and management. Regarding adolescence this is a crucial area for
all those with an Autistic Spectrum Disorder as within everyone
else in society it is a time that shapes and makes us who we are
in our adult years.
Whilst people with an Autistic Spectrum Disorder go through
the physical signs of puberty at a normal age the difficulties
become most apparent in from my own research some children have
shaved off their pubic hair due to the fear of change, also get
obsessed about germs and self cleansing and if they see a bit
of dirt on them or something else such as food they panic including
under things like finger/toe nails etc The subject of Personal
Social Health Education needs to be taught in a careful, sensitive
and diplomatic way including when addressing the issue of sex
as in my experience most people with an Autistic Spectrum Disorder
will either be more familiar with slang terms or the correct names
for parts of the body etc but very rarely understand both and
this in itself can cause confusion.
To the same token some people with an Autistic Spectrum Disorder
may refuse to have a shower with their peers after a games lesson,
the issues around relationships also are a problem and discovering
sexual organs and their sex drive can all pose a problem as many
people with a high functioning Autistic Spectrum Disorder and
Asperger's syndrome want a relationship but have very little clue
how to go about it, how to sustain and maintain it especially
the social side from the school disco, to going out and as a result
can be open to victimisation and abuse (including sexual), this
period of uncertainty within our minds and bodies can carry on
and in my research carries on at least until the person reaches
their early—mid twenties.
Since the introduction of the Internet many people with an
Autistic Spectrum Disorder may go into chat rooms and be unable
to pick up, note and recognise innuendos and see people they talk
to in chat rooms as their friends especially those they haven't
met in person, when I have broached the subject of paedophilia
etc with some of my young people I am often ignored as for example
comments come out "it won't happen to me".
Going back to the social side a number of people with an
Autistic Spectrum Disorder want friends but often on their terms
and where they can talk about their thing which is OK after a
while but may become tedious and too much for the listener and
the child with an Autistic Spectrum Disorder might not pick up
on the social cues even the obvious such as yawning and walking
away.
The biggest problem for a number of people (including adults)
with an Autistic Spectrum Disorder is that to the naked eye is
that they look normal and may sound normal for a while and it
is only when you engage the problems start to become apparent
and noticeable. To some people this could be fascinating and intriguing
when the young person could be seen as freaky or as a little professor
or mildly eccentric but this could be problematic as much as it
is complimentary when coming into contact with people like the
police, the criminal justice system which is a very, very big
issue and needs addressing properly—all in all what is cute
at six might not be cute at 16.
1. (d) Rise in the number of pupils with non-statemented
Special Needs—Causes and potential cures.
There is a number of reasons of why pupils with non statemented
special needs is rising is because the criteria for obtaining
a statement of Special Educational Needs has become ad hoc in
terms of where you live as different Local Education Authorities
have different criteria or may be bending the rule or if the LEA
feels the child does not have specific needs. In my conversations
with people on my mailing list it has also become apparent that
the moment parents/carers mention a diagnosis along the autistic
spectrum the Local Education Authorities clamps up and either
refuses any additional help whatsoever or even questions the diagnosis.
The biggest factor for the causes is that money and resources
(existing resources) can and should be made available—hence
failing to look and appreciate the individual, putting all the
eggs into one basket, or in some cases putting your colours in
your whites and will have no real idea what you will get until
you open the door of the washing machine. Whilst Autism Consultancy
Services recognises and appreciates we are all governed by time,
money and resources but placing square pegs into round holes is
not an answer for short, medium or long term.
Due to most Local Education Authorities, schools and teaching
staff and the lack of accurate, regular and consistent training
they have little or no understanding of what Autistic Spectrum
Disorder is all about. Over the last years and since schools have
been given funds through devolvement to schools each school has
a different idea on how the funds can be spent.
Regrettably I have seen many schools that place the money
aligned for Special Educational Needs has been mixed with other
funds and a variety of things have been purchased for example
sports facilities, a new member of staff that has no direct contact
with the children with Special Educational Needs, a new computer
system and so on.
The biggest problem is continuity and consistency within
local authorities and I have noticed a difference since devolving
of funds is that what a child may get in a primary school may
not be carried through to secondary school particularly since
the decision was made to reduce the numbers of Statements of Special
Educational Needs. In the rare cases where Statements of Special
Educational Needs are issued they are not maintained or updated
with new information, advice, and evidence or through the Individual
Education Plans either with the school or the Local Education
Authority.
What makes Autistic Spectrum Disorder unique is that just
because a child appears to have grasped/understood a concept does
not necessarily mean they have, for example if someone asked a
child if they wanted a drink of orange or pineapple juice the
child may say either the first or last thing that they heard unaware
of what was being asked and may repeat through echolalia and this
is not specific to choice and decision making it can also extend
to when the child has an assignment on comprehension in that they
may be able to read well but as to understand and then take things
out other than what someone has written and quote them directly
either in written and/or verbal contexts. It has also been noted
that children with an Autistic Spectrum Disorder will impersonate
characters from films, cartoons in every sense by saying things
the character says and dressing up like the character and then
in every setting.
A successful Individual Education Plan needs to ask the following
questions:
— Checks whether the things in it are happening
— Looks for ways to make sure that those that aren't
happening do get done
— Agrees who will do what and by when
— Identifies how people will know if the plan is
no longer working and needs a further review
Once the following has been answered we then need to look
at the following model:
— Essentials (or non-negotiable)—Things that
must happen if the person is to achieve their lifestyle and maintain
their well-being.
— Important (or strong preferences)—Things
that will make a significant difference and without which life
may be tolerable but little more.
— Pleasures (or highly desirable)—Things that
the person would like to have (or not have) in their life to make
it more pleasurable and satisfying.
The answer to this is to restore Statements of Special Educational
Needs and have an independent body that is responsible to Parliament
but not just the Department for Education and Skills; it needs
to encompass other departments such as the Department of Health.
When it comes to parents and carers applying for benefits such
as Disability Living Allowance, Incapacity Benefit, Mobility cars
that when a decision must be based on the diagnosis and not on
something like IQ or other tests that look at intelligence.
If we continue the downward spiral of removing and/or reducing
the number of Statements of Special Educational Needs how are
we going to assess the needs of the child and ensure that guidelines
that have been drawn up are followed and adhered too. It is well
documented that parents and carers of all children who have a
disability have to fight and struggle for everything and just
because their child turns 18 do not mean the problems go away
or disappear including that Autistic Spectrum Disorder is a disorder
that only affects children.
It is a problem that needs addressing that when a child becomes
18 parents have an additional struggle with local authorities
in whether their son/daughter will come under the learning disability
or mental health services as well as keeping and securing funding
for the rest of that person's life including long after our parents
have become unable to care or passed away.
When we become parents we have no handbook and when we have
a child with a disability everything that we have been taught
from our parents and done with other children with a disability
we often learn as we go along and need support from friends, family
and professionals and not to be put down, condemned, to be disbelieved
or patronised.
Having a child with a disability such as an Autistic Spectrum
Disorder is harder than most due to the complexities, variability
and the child can show furthermore there are many contradictions
within an Autistic Spectrum Disorder in that people with an Autistic
Spectrum Disorder can do some things but not others. Once again
there is a myth that all people with an Autistic Spectrum Disorder
are talented in areas such as maths, art, music etc but the actual
figure of people with an Autistic Spectrum Disorder who are exceptionally
talented is 1% of all people with an Autistic Spectrum Disorder.
Personally I believe a talent is only a talent if it is useful
for the individual and whilst it can be used as a way to engage
and communicate with the person with an Autistic Spectrum Disorder
it can also be isolating, soul-destroying problems where people
exploit and use the talent to the extreme which can lead to bullying
etc.
There is no consistency within authorities and it has become
common practice to place people with a high functioning Autistic
Spectrum Disorder in the mental health services which causes no
end of problems as psychiatrists often use medicinal drugs that
often cause Tardive Dyskinesia and mental health problems including
addiction to medicinal drugs and not just anti depressant drugs
either which could cause damage to the gut, kidney and liver of
the child/young person with an Autistic Spectrum Disorder, all
in all Local Education Authorities, schools and the system needs
to recognise the needs of the child, not the condition be driven
as needs led to the individual as a person, and his or her Autistic
Spectrum Disorder. It is regrettable that most General Practitioners
don't understand Autistic Spectrum Disorders either and will either
refer to a psychiatrist and/or prescribe drugs when all the person
may need is someone like a counsellor.
2. (a) what steps can be taken to make the Statementing
process less adversarial?
We need to ensure that good practice is based upon evidence
and built upon, whilst this may sound bureaucratic there needs
to be some reviews of statementing and to ensure that all LEAs
are singing from the same hymn sheet.
Within each local authority and Local Education Authorities
there needs to be a body set up which has representatives from
the council including councillors as the gap between Westminster
and local authorities continues to widen hence helping to increase
the postcode lottery also within the independent body there needs
to be people who have ongoing experience as well as those people
who have worked hands on. Perhaps those who provide education
and care for children with Autistic Spectrum Disorder need to
be working towards a charter mark that shows good practice (but
is reviewed every three years by an expert panel) and is recognised
in society like the Kitemark.
The whole statementing process needs to be simplified and
to help parents understand there needs to be an emphasis in understanding
the process, what it means as they go through it and guidelines
and support mechanisms where they can challenge the Local Education
Authority without feeling threatened or intimidated. Furthermore
there also needs to be a department within government that works
with the Department for Education and Skills that links in with
other educational organisations including those in the private/voluntary
sector and not just the big organisations either as there is a
lot of knowledge and expertise out there that can and needs to
be tapped into and at the moment it is underused and disvalued.
There also needs to be a process that speeds up the process
in that once a child has received a diagnosis there doesn't need
to be further assessments if joined up thinking and planning is
working correctly as why can't educationalists assess educational
needs when making a case for diagnosis, in my experience 95% of
children who are diagnosed with an Autistic Spectrum Disorder
will invariably need a Statement of Special Educational Needs
which should list and name all the needs and not just those that
could include needs met by other agencies including the Department
for Work and Pensions and the Department of Health.
2. (b) How can we increase parental trust in Statementing
whilst making it less bureaucratic?
Parents would trust an independent body more than an agenda-run
Local Education Authority which is based on funding and money
more so than needs and how those needs can be met effectively
and accurately. Furthermore Local Education Authorities need to
recognise the individual, the needs of the person as they are
to each person and not solely based upon a text book, website
or journal etc
Whilst Autism Consultancy Services feels it is OK to use
the above as reference and to check out facts and as a guide but
not to see all people with an Autistic Spectrum Disorder as the
same and with the same needs. Another area to make statementing
less bureaucratic is to communicate on a regular basis and more
importantly on a consistent and honest and equal platform. It
may also need to be possible to use staff time more effectively
if staff were encouraged to work different hours as many parents
who work are unable to phone or make contact with Local Education
Authority personnel during the day or get time off to attend meetings
etc Statements of Special Educational Need need to be updated
in conjunction with Individual Education Plans as they are not
being maintained or amended particularly when the child is going
through the transition stages including between primary and secondary
schools and even changing basic information such as the address
of where the child lives.
All in all communication needs to extend to all parties and
agencies including the service that is providing the support,
education and provision. Local Education Authority personnel also
need to stop putting a kybosh or their own feelings to make parents
feel g what guilty for their views or beliefs. Parents are experts
of their children; they know their children better than anyone
else and within their unique knowledge and expertise they know
what works, doesn't work and how effective or ineffective things
may be and whilst trial and error is how we all learn it is important
to recognise that mistakes will occur but there must be a balance
struck when the costs and risks are being learnt which can be
extended to a risk assessment and the ultimate decision must be
made by the parents without continual harassment and questioning
of issues.
2. (c) How can we ensure that the Statementing process
is conducted even-handedly across the UK?
We can ensure that we don't use the one size fits all model
that has been used excessively over few the last years, this can
be extended to disabilities/special educational needs too. All
children/young people are individual and how their statement is
drawn up must be individual. When taking advice on Statements
and how provision can be met we need to take evidence from all
quarters including external agencies across the voluntary, private
and public sectors.
Statements need to be regulated and not seen as an expensive
part of Local Education Authority budgets, for children with an
Autistic Spectrum Disorder it is important to recognise they will
become adults with an Autistic Spectrum Disorder, as there is
too much suffering from discrimination in terms of education for
ageing, linked to the failure to recognise their specific needs
. . . There are many fine lines between personality and an Autistic
Spectrum Disorder, it might not be possible to identify and separate
the two at any time or within any one person but it is important
to work with the whole person as to dealing with the two as separate
identities as it is almost inevitable they will overlap. If a
mapping exercise is to be conducted to obtain a picture of what
is going on, what is happening and what needs to be done it needs
to be done accurately and impartially by listening to all views,
and ensuring feedback is constructive and made available for those
that want and need it.
Local authorities need to be able to share information and
advice more easily and through regional forums. Finally if a child
moves from one authority to another the Statement of Special Educational
Need must go with the child and the needs set out must continue
to be met based on the evidence, due to the problems with change—particularly
short term and unannounced change for many children/young people
with an Autistic Spectrum Disorder there may need to be additional
support put in place for a while until stability is restored,
as to how long to maintain this additional support it is similar
to how long is a piece of string?
2. (d) Is there an alternative to Statementing that
will provide the same certainty and security of provision for
children?
No as long as Statements of Special Educational Needs identify
real needs for the person, Statements also need to be specific
and accurate as well as amended regularly by continual advice
from all areas including the parents. Local Education Authorities
and personnel need to be checked, reviewed and evaluated for such
through an independent body which can work along side the Office
for Standards in Education. Statements of Special Educational
Needs need to be encouraged and used by colleges and universities
for when young people are going through the further/higher education
system as in my experience many colleges and universities are
ill equipped to support and help people with an Autistic Spectrum
Disorder.
As personnel in learning support centres and lecturers don't
always understand the real issues and instead see the person as
an adult and the ownership for all issues including those that
are non-academic eg socialising during breaks, looking for somewhere
to live after leaving halls, finding the local amenities in the
community as well as ensuring they attend lectures, meet deadlines
for assignments and due to many people with an Autistic Spectrum
Disorder being unaware of their specific needs or how to explain
them in a way in which they understand and can be understood which
relates to the problems of abstract thinking etc,
Furthermore many people with an Autistic Spectrum Disorder
have short term concentration and attention spans people with
an Autistic Spectrum Disorder may forget to attend lectures or
go for extra help/support or in some cases won't go at all particularly
those with a high functioning Autistic Spectrum Disorder feel
they are "sponging" or "scrounging" off the
system when it needs to be encouraged that we all need help of
some help may it be financial, practical or emotional or a combination.
In my experience university and college life mainly focuses
the on academic and performance of children where many children
with Special Educational Needs will not be able to reach or sustain
academic qualifications as their peers. Furthermore the information
on final Statements of Special Educational Needs if done properly,
accurately and correctively is a good template that parents can
refer too when clarifying and/or confirming the relevant sections
in a chronological order—ie if it is not broken why fix
it?
2. (e) Should LEAs continue to have responsibility
for drawing up Statements?
A totally `independent' national governing body is needed
(perhaps having charity status)—its panel drawn from experienced
Special Educational Need/disability organisations such as Independent
Panel for Special Educational Advice, Children with Disabilities,
Network 81 etc Also included should be representation from Special
Educational Needs specific voluntary organisations, such as Autism
Consultancy Services and/or Autism in Mind. The Government could
review this on an annual basis in conjunction with local authorities.
It is well documented and researched that when parents have
a child with additional needs or a disability there is a constant
fight and struggle for most things eg education, respite, equipment
etc Is it possible or feasible that when the child is going through
the assessment and diagnostic process that professionals could
work collaboratively and cohesively to help parents through a
minefield of mazes, confusion and stress to help signpost and
direct them to people in welfare support, social services, respite
care, organisations that work in the disability field (not just
national organisations either as most national organisations have
local branches, affiliates etc) and organisations that provide
equipment etc.
If Local Education Authorities are to continue being responsible
for Statements of Special Educational Need, there still needs
to be an organisation that can oversee the process and ensure
the statements are accurate, maintained, not based on funding
and services that are the cheaper option. Provision must be user
led and services must accommodate all the needs of the person
and not the person over their needs. Within Part two there needs
to be detail and description of the Autistic Spectrum Disorder
which are described clearly, thoroughly and in a way that can
be understood by all parties. Additionally it should set out unambiguously
the nature and severity of the needs in all settings and not just
in the classroom and include play/break time particularly for
those with an Autistic Spectrum Disorder with their problems around
unstructured times.
Within the area of the Statement of Special Educational Needs
where and when setting out the provision it must be made clear:
— The appropriate facilities, equipment and staffing
arrangements.
— The appropriate (including sensory and non-sensory)
modification to the curriculum.
— The appropriate exclusions from the curriculum.
Within the provision there is a need for clear, honest and
regular Individual Education Plans Individual Education Plans
with clear ongoing targets that show progress of short, medium
and long targets. These targets need to be based on the child
with his/her need and not needs and the child, in order to have
a successful Individual Education Plan the Individual Education
Plan is ongoing and ideally is ongoing and as mentioned earlier
for the person with an Autistic Spectrum Disorder and their difficulty
of transferring skills from one place to another can Individual
Education Plan targets be developed for when the child is at home.
3. (a) Is the Government right to allow the continuation
of a programme of closures and integration?
The terms mainstreaming and inclusion are often used interchangeably
in education today. This inconsistency in usage has led to some
confusion about what educators mean when they talk about inclusion
or full inclusion. Mainstreaming is the practice of educating
the disabled student in the general education classroom. Inclusion
is a newer term used to describe the placement of students in
regular classes for all or nearly all of the school day; mainstreaming
is often associated with sending a student from a special education
class to a regular class for specified periods. Although in some
inclusion models students are mainstreamed only part of the day,
students in full inclusion programs remain in the general classroom
for the entire day.
Throughout my evidence I have talked about whether to use
"delusion" or "illusion". Delusion means "a
mistaken idea or belief". Illusion a `false appearance or
deceptive impression of reality". They are synonyms—but
we have chosen "delusion" because it is stronger—below
are the three Common Delusions:
— Inclusion means that everybody must love everybody
else or "We must all be one big, happy family!" Sometimes
this delusion pushes people into pretending, or wanting others
to pretend, that real differences of opinion and personality don't
exist or don't really matter.
— Inclusion means everyone must always be happy
and satisfied or "Inclusion cures all ills. The delusion
that Inclusion equals happiness leads to its opposite: a pseudo-community
in which people who are disagreeable or suffering have no place
unless the group has the magic to cure them. Groups trapped in
this delusion hold up a false kind of status difference that values
people who act happy more than people who suffer. This delusion
creates disappointment that Inclusion is not the panacea.
— Inclusion is the same as friendship or "We
are really all the same".
Friendship grows mysteriously between people as a mutual
gift. It shouldn't be assumed and it can't be legislated. But
people can choose to work for inclusive schools and communities,
and schools and agencies and associations can carefully build
up norms and customs that communicate the expectation that people
will work hard to recognise, honour, and find common cause for
action in their differences.
Going upon that so what is integration, it is "To Make
or Become Whole or Complete" or
"To Bring Parts Together into a Whole" all too often
many people get the words inclusion and integration confused or
mixed up when really they are very different. To put things into
context I have defined the two words below:
— Inclusion means providing all the features
and arrangements that allow everyone to access and participate
in their environment in advance of any stated need. It is a proactive,
anticipatory approach intended to facilitate as much independence
as possible.
— Integration means providing certain features
and arrangements that allow some people to access and participate
in their environment in limited circumstances and in reaction
to a stated need. It is a reactive, non-anticipatory approach,
which provides for a limited degree of independence.
To answer the question about should the Government right
to allow a continuation of closures and integration, Autism Consultancy
Services believes this is a definite no, as requested already
we need an urgent, neutral and impartial view on what we have
already. Whilst the Government continue to go ahead the choice
of the parents is continually being denied. Giving parents/carers
choice comes in the following sections
— Happiness and renewal—Wanting to be happier?
Wanting to feel good more often? Looking for quiet confidence
and a sense of peace that never leaves?
— Empowerment—Wish you could really know what
you want out of life and develop the confidence to pursue your
dreams?
— Growth—Would you like to break through limitations,
drop self-judgments and live with more clarity and comfort?
Earlier I mentioned that most children with an Autistic Spectrum
Disorder can be like Jekyll and Hyde and recent research shows
that children and young people with an Autistic Spectrum Disorder
will invariably surmount their problems entirely, bring their
problems home and potentially explode from the moment they walk
through the door or try to work through their problems out themselves
and explode sporadically and in turn makes it harder for parents/carers
to establish the real problem or route of their problems which
will exacerbate on to other family members.
Once again the issues of once a child/young person has left
school and entered the next stage of his/her life comes to mind
and they enter adult services or support (if any) if the correct
and accurate provision is not made available when the child needs
it most the likelihood that greater support will be needed later
on in the child's life including counselling, psychotherapy, cognitive
behavioural therapy etc.
Our life as children is a very small part of our lifespan
children are not mini adults nor are they objects or products
of us as adults. The history of childhood is a subject of controversy.
Since serious historical investigation began into this area in
the late 1960s, historians have increasingly divided into two
contrasting camps of opinion, those advocating "continuity"
in child rearing practices, and those emphasising "change".
If we as adults (including parents/carers/ policymakers and
legislators) fail children and adolescents by not meeting their
individual needs there is a risk for developing trauma-related
problems. These problems include severe anxiety, depression, and
substance abuse. failure at school, susceptibility to victimisation
and abuse, and criminality—it is unknown how many people
with an Autistic Spectrum Disorder are in prison or one of the
three special hospitals.
Many healthcare systems, teachers, and caregivers are only
now beginning to recognise and address the problem. This programme
presents an overview of the effects of childhood trauma on the
individual and on society. On the other hand if we see children
as children especially those up to six years of age and provide
healthy, safe and nurturing environment that includes opportunities
to support the emotional, social, physical, cognitive, and spiritual
aspects of children within the context of their community that
welcomes their participation and empowers them as a basis for
their future.
Neuroscientists have succeeded in demonstrating that the
first years of a child's life are critical for establishing the
foundation for later development and learning that will ultimately
see the child through to successful adulthood. More than three
decades of brain research demonstrates that the brain is almost
entirely developed by the time a child enters school. However
if we get it wrong it can lead to stress which can affect the
way people think, act, and feel. Response to stress is both learned
and natural and may be appropriate and healthy, or it may be inappropriate
and unhealthy. However, excessive stress can interfere with life,
activities, and health.
3. (b) Should guidance to LEAs about Inclusion be
changed?
Yes, greater consideration should be given to Mental Health
issues. Children with an Autistic Spectrum Disorder are continually
being abused and failed by the existing `Inclusion' state system
even within joined up thinking and planning. The Child and Adolescent
Mental Health Services are failing to meet the mental health needs
of children, young people and adults with an Autistic Spectrum
Disorder. Commissioning and delivery of Child and Adolescent Mental
Health Services present challenging workforce, resource and ethical
problems.
Child and Adolescent Mental Health Services haves drawn attention
to the literature that I have referenced and other literature
on some issues that impact on the decisions of policymakers (who
set the imperatives for and the direction of services), strategists
(who are responsible for designing services to meet identified
objectives), commissioners (who are responsible for prioritising
key aspects of service delivery and allocating new resources to
service developments in pursuit of the strategists' objectives
and designs) as well as practitioners (who face the task of delivering
healthcare).
The epidemiology of children's mental health problems and
disorders illustrates the enormous influence of social deprivation,
exclusion, and poverty on the mental health of the population
and the huge distances that civil societies still have to go,
despite undoubtedly enormous progress, to achieve equitable and
responsive services. The requirements on services are characterised
by the complexity of both the problems faced by young people and
their families and the complexity of the task of integrating,
across teams and agencies, the responses they often require.
This has led Child and Adolescent Mental Health Services
to re-examine the interface between scientific approaches to healthcare
and the humanities, ie the kind and breadth of evidence that is
admitted into evidence-based practise in understanding the dilemmas
that their patients face, and, in particular, how evidence should
be combined with values in developing responsive and sensitive
child-centred decision- making. The growing complexity of clinical
practice in this area requires, we argue, the skills equally.
What makes this increasingly problematic for people with
an Autistic Spectrum Disorder is that an Autistic Spectrum Disorder
is not a mental health diagnosis and nor is it a mental health
based solution. It has become all too often for families and children/young
people with an Autistic Spectrum Disorder to go down the psychiatric
route which either involves medicinal drugs that I mentioned earlier
and/or they are sent home as very few psychiatrists truly understand
Autistic Spectrum Disorder and the varying prognoses and even
if parent/carers insist they are often sent with coping strategies
or to help put things in place that clearly don't and won't work.
That said in a number of parts of the country social groups
(a group is a collection of two or more individuals who have developed
a common social identity relating to some object of activity)
where people with Asperger's syndrome get together on a regular
basis once a week/fortnight/month etc and whilst these are a start
it is often the social which is looked at where users may go to
the pub, pictures or meet at a venue to share experiences.
Many Social Groups meet monthly and some more frequent than
other Social Groups activities are discussed and decided on by
group members. Autism Consultancy Services works with a number
of small groups UK-wide to help people gain and improve the skills
they need to make successful contributions to meetings. The difficulty
that Autism Consultancy Services faces is twofold a) the infrequency
of meetings as it often takes time for meetings to get going and
to be led by the users as to someone like me as a coordinator/facilitator
and b) who pays and runs the groups as due to the complexities
and issues surrounding funding it is commonplace in whether such
a key area is an area for health as in speech and language therapists,
educationalists as in teachers, senior teachers etc but yet many
children/young people with an Autistic Spectrum Disorder don't
get this additional support on their Statement of Special Educational
Need either or social services as it is a social problem.
Whilst the statutory agencies argue and decide whose responsibility
it is the issues and the need continues to grow and the apparent
pettiness is proving unhelpful and the talk about cohesive working
is still not working due to different criteria in funding and
delivery of key services. The added dimension is where some users
are more vocal and verbal than others and in my experience those
who appear more vocal/verbal often have significant needs and
problems including in social skills eg turn taking, when to raise
their voice, intonation, assertiveness etc Social skills are a
behavioural manifestation of social cognition (Minshew & Goldstein,
1998; Loveland, Pearson, Tunali-Kotoski, Ortegon & Gibbs;
2001; Travis, Sigman & Ruskin, 2001).
Social skills are those communication, problem-solving, decision
making, self-management, and peer relations abilities that allow
one to initiate and maintain positive social relationships with
others. Deficits or excesses in social behaviour interfere with
learning, teaching, and the classroom's orchestration and climate.
Social competence is linked to peer acceptance, teacher acceptance,
inclusion success and post school success. Displaying poor social
skills is likely to get one rejected by others (other kids don't
like them and won't associate with them). .
For the child with an Autistic Spectrum Disorder or Asperger's
syndrome social skills training is imperative and often broken
down into the following four areas:
Manners & positive interaction with others
— approaching others in social acceptable ways
— how to asking for permission rather than acting
impulsively
— how to make and keep friends
Appropriate classroom behaviour
— work habits/academic survival skills
— seeking attention properly
— accepting the consequences of one's behaviour
Better ways to handle frustration/anger
— counting to 10 before reacting
— distracting oneself to a pleasurable task
— learning an internal dialog to cool oneself down
and reflect upon the best course of action
Acceptable ways to resolve conflict with others
— what to do when you make mistakes
— handling teasing and taunting
There are two main terms and definitions with social skills:
— Socially skilled: the ability to respond to a
given environment in a manner that produces, maintains, and enhances
positive interpersonal (between people) effects
— Social competence: one's overall social functioning.
a composite or multitude of generalized social skills. (Social
competence can be improved by teaching social behaviours/social
skills)
Children and young people with an Autistic Spectrum Disorder
are frequently described as having "social cognitive deficits"
(Schopler, Mesibov & Kunce, 1998) which implies that the underlying
cognition fails to support the presentation of "appropriate"
social skills. This core cognitive deficit appears to be the result
of syndrome of weaknesses that would support the development of
social cognitive knowledge.
A number of theories have significance in understanding genesis
of the behavioural outcomes, or social skills of persons with
an Autistic Spectrum Disorder. Central Coherence Theory (Frith,
1989; Happe«, 1994) speaks to the fact that most persons
on the an Autistic Spectrum Disorder spectrum are weak in their
ability to conceptualize whole chunks of information; they demonstrate
a preference for attending to details and relying on their rote
memories to make sense of the ever-changing world around them.
Children and young people with an Autistic Spectrum Disorder
may also have difficulty with the organisation of written expression
or independently planning to complete class assignments. Theory
of Mind (ToM), (Baron-Cohen, 1995) establishes that persons with
an Autistic Spectrum Disorder have difficulty considering the
perspective of others, such as their emotions, motives and intents.
By failing to account for other's perspectives, people with
an Autistic Spectrum Disorder tend to misinterpret their messages
(Tager-Flusberg, 2000). People with an Autistic Spectrum Disorder
also tend to talk at length about their own topic of interest
because of their difficulty monitoring and responding to the social
cues/social needs of their communicative partner. Twachtman-Cullen
(2000) indicates many of the social skill deficits observed in
persons with an Autistic Spectrum Disorder may have their genesis
in these students lack of ability to decipher subtle meaning from
their environment in part due to all of the above mentioned theories;
in other words, these students have a global processing deficit.
The I LAUGH Framework (Winner, 2000) was developed to provide
an overall model of social cognitive deficits. "I LAUGH"
is an acronym that represents the following concepts:
— I= Initiation: The difficulty initiating language
or action for interactions or tasks that are not routine.
— L=Listening with one's eyes and brain: the difficulty
with auditory processing as well as visual processing of the subtle
cues provided in social interactions that facilitate social knowledge.
— A=Abstract and inferential: the difficulty deciphering
meaning from abstract language and non-verbal cues provided both
through student's curriculum tasks as well as through social interaction.
— U=Understanding the perspective of others: difficulty
interpreting the motives, emotions and intents of others, which
is fundamental for successful social interpretation and social
regulation.
— G=Getting the big picture or gestalt processing:
difficulty recognising and comprehending underlying concepts.
— H=Humour: these students often demonstrate a lovely
sense of humour but may fail to use humour appropriately given
particular contexts.
The intent of the framework is to demonstrate how complex
social skills, such as maintaining a conversation or personal
problem solving, actually require a symphonic coordination of
the I LAUGH Framework's cognitive components for a person to behaviourally
demonstrate social the use of appropriate social skills. A critical
component of any diagnostic assessment for students with possible
social cognitive deficits is an interview with the parent and/or
close caregiver. The Asperger's Syndrome Diagnostic Scale, (Myles,
Bock & Simpson, 2001) and the Gilliam Asperger's Rating Scale,
GADS, (Gilliam, 2001) have recently been published to explore
the more typical language, social, sensory and organisational
development we might expect to observe in students with Asperger's
Syndrome.
Neither scale is designed to be the single instrument used
to make a diagnosis, but each is useful for directing the evaluator
to explore the more specific nature of developmental issues associated
with persons with Asperger's Syndrome. The information they elicit
is valuable and serves as an excellent supplement to social-pragmatic
observations and deeper informal and formal assessments of language.
Appropriate social skills are a demonstration of subtle but
complex social knowledge. To more fully understand the origin
of social skill deficits it is important to gain further knowledge
about a student's ability to process and react to different types
of socially based information. The "I LAUGH Framework"
describes different components to consider in the evaluation of
students suspected as having social cognitive deficits. Meaningful
interaction is the key to understanding and making sense of the
world around us. What ever we do with our children we have to
do with `their' autism in `our' minds. It does not work the other
way around.
3. (c) Should the law be changed to remove the current
bias in favour of Inclusion?
The law should be amended as with most things there are pros
and cons and I have listed some of the pros and cons of inclusion
for those with an Autistic Spectrum Disorder:
The Pros
— Access to "better" models of social
and linguistic behaviour.
— Easier access to full curriculum resources and
National Curriculum.
— Specialist subject teaching to develop person's
interests and strengths.
— Peers available as a resource for "buddies"
and teaching aides but not to replace the work/role of teacher.
— Higher expectations to develop knowledge.
— Broader opportunities for curriculum development,
qualifications and career choice.
— Locational opportunity for social integration
within a community and for family involvement.
— Opportunities to spread awareness and tolerance
of Autistic Spectrum Disorder in society.
— A better context for developing understanding
of, and conformity to the cultural values and rules of society.
The Cons
— Many staff and pupils to be adjusted and adjusted
to.
— The National Curriculum may not be designed to
meet the special needs of the person.
— Less likelihood of staff having knowledge of Autistic
Spectrum Disorder.
— Poorer staff: pupil ratio to identify and meet
needs and develop skills except where extra support is allocated
to the person on a 1:1 or small groups as most people with an
Autistic Spectrum Disorder work better and concentrate more in
this way.
— Fewer opportunities to learn in functional contexts
and to address difficulties that interfere with chances.
— Poorer understanding of isolated affects of an
Autistic Spectrum Disorder and fewer opportunities to work with
and support families.
— Fewer opportunities for staff to share problems/experiences
and successes with others and gain support.
— Assumptions of "normality" as a framework
offer less understanding and tolerance of difference.
— Poorer staff: pupil ratio to identify and meet
needs and develop skills.
Personally I feel that inclusion can work and be an effective
system if done properly. I think the general education teacher
should be trained in how to work with children that have disabilities.
I also feel that there should be an abundance of resources available
to the general education teacher (ie modified curriculum, special
education teachers, resource teachers, aids, administrators, etc).
With the adequate resources and training, inclusion could be an
extremely successful program. Having an Autistic Spectrum Disorder
is defined as "a severe disorder of thinking, communication,
interpersonal relationships, and behavior" (Smith, 2001,
p 506). People with this disability often cannot develop social
relationships, have verbal communication problems, and need sameness
in their environments (Smith, 2001).
Regular education classrooms are bigger and less structured
and this can make it extremely difficult for a student with an
Autistic Spectrum Disorder to perform up to his or her potential.
In an entirely inclusive program students have little time in
special education settings (Doelling, 1998). They depend on paraprofessionals
that make them less involved in teacher instruction and independent
work (Bang & Lamb, 1996). Many teachers feel inadequate to
give what is necessary for a child to be prosperous in his or
her classroom.
Kasari, Freeman, Bauminger, and Atkins (1999) studied parental
perceptions of inclusion. Their research found that more often
than not, parents of children with an Autistic Spectrum Disorder
in their study preferred mainstreaming to full inclusion. Over
half of the parents stated that their children's needs could not
be met in an inclusive setting (Kasari, 1999). Although integration
is important, experts agree that specially trained teachers are
necessary to put carefully designed instructional programs to
work. Students need structured schedules, concrete examples, limited
distractions, and controlled teacher verbal communication (Smith,
2001).
The debate over inclusion is on going and really depends
on what is best for the individual student. Children with an Autistic
Spectrum Disorder exhibit different characteristics and function
at different levels (Smith, 2001). It is necessary to look at
each case separately because what works for one person may not
work for another. People with an Autistic Spectrum Disorder have
a disability with thinking, communicating, socially interacting,
and behaving appropriately (Smith, 2001). Parents of children
with an Autistic Spectrum Disorder are typically concerned with
peer avoidance and a lack of specialized instructors in inclusive
schools (Kasari, 1999). In certain cases inclusion can be successful.
However, it all depends on the students and the accommodations
available to them. It can lead to better behavior and social acceptance
if implemented correctly (Bang & Lamb, 1996).
Students with this disability generally need a more structured
environment with specialized teachers for academic achievement.
I do believe that mainstreaming for times such as recess and lunch
are vital. Whitaker, Barratt, Joy, Potter, and Thomas (1998),
did a study on `circles of friends'. A group of students, including
those in regular education and those with an Autistic Spectrum
Disorder, would often get together to promote acceptance and friendship.
Teachers I have spoken to have described inclusion for children/young
people with an Autistic Spectrum Disorder a learning experience
for everyone involved.
Inclusion generally is not going to provide children and
young people with an Autistic Spectrum Disorder the resources
they need to be successful academically. However, in order for
them to function in society they need a balance of specialized
education and socialization. Since most children and young people
with an Autistic Spectrum Disorder are visual learners, visual
cues can be a lifeline. They inform students of the rules, their
schedule, and changes in their routine.
For example, the teacher can create a person locator system
on a bulletin board, which shows students what they will do and
with whom that day. Remember one size does not fit all and everyone
must and needs to be seen and viewed as an individual equal but
we have to be clear in that a child with an Autistic Spectrum
Disorder may have several academic qualifications but still have
huge problems in socialisation and therefore when modernising
and adapting the National Curriculum there must be an emphasis
on social skills that the child can use in the real world including
in the workplace.
4. What are the ramifications of these answers on provision
of SEN in the UK?
Whilst Autism Consultancy Services recognises and appreciates
it takes time and skill to create/generate new legalisation and
policy and then to reach local authorities for Councillors, policy
makers, legislators and implementers but the whole system needs
a through and methodical review where people who have varying
knowledge, experience and expertise can meet round a table to
discuss key issues. There needs to be a greater emphasis and push
on bridging the gap between central government and local government.
Unfortunately departments have often been positioned competitively,
favoured and driven by different departments or factions and thereby
encouraging people and organisations to `choose' one of them,
rather than using a bit of `joined-up-thinking' and recognising
that they are interrelated and each has some significant benefits
to bring. Increasingly, world-class organisations are recognising
that the smart approach isn't to `pick one' but to adopt all the
latest thinking in an integrated, cohesive and yes even `joined-up'
way.
The upshot of joining-up thinking is all these approaches
is this: If you can combine effective, capable processes with
skilled, improvement-focused teams and individuals who are working
together to deliver goals and targets that fit together with those
of all the other teams to deliver the overall business goals—then
you are really heading towards the future you want.
If we are to assist people with Autistic Spectrum Disorder
to achieve their full potential then we must not only address
their needs, we must also begin to think in terms of the strengths
that individuals with Autistic Spectrum Disorder have. We need
to work with the Social Model of Disability hence people with
Autistic Spectrum Disorder are disabled by the barriers that exist
in a society that does not take account of their needs but addresses
the accomplishments (community presence, choice, developing competence,
respect and participation as described by O'Brien (1981).
Finally "Stand up for what you believe in, even if it
means standing alone."
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