autism europe, persons with autism spectrum disorders identification, understanding, intervention

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PERSONS WITH AUTISM

SPECTRUM DISORDERSIdentifcation, Understanding, Intervention

An AE ocial document on autism elaborated by:

Catherine Barthélémy

Joaquin Fuentes

Patricia Howlin

Rutger van der Gaag

This document has been produced with the support o the

European Commission. The contents o these pages do not

necessarily refect its position or views.

For Diversity

Against Discrimination

AUTISM EUROPEaisbl



Catherine Barthélémy is Head o the Neurophysiology and Functional Examinations o the University Service in

Child Psychiatry, University Research Hospital Centre, Tours. She directs the autism research projects o INSERM Unit

930 and is a Member o the Executive and Scientic Committees o ARAPI (Association pour la recherché sur l´autisme

et la prevention des inadaptations), France.

Joaquin Fuentes is Head o the Child & Adolescent Psychiatry Service, Policlinica Gipuzkoa, and Scientic Advisor,GAUTENA Autism Society, San Sebastian, Spain. He was the scientic coordinator o the Autism Study Group,

National Institute o Health Carlos III, Ministry o Health, Spain, and serves as one o the Assistant Secretaries-General

or the Executive Committee o IACAPAP (International Association or Child and Adolescent Psychiatry and Allied

Proessions).

Patricia Howlin is Proessor o Clinical Psychology at the Institute o Psychiatry, King’s College London, and ConsultantClinical Psychologist, Maudsley Hospital, London. She is co-chair o Research Autism, UK.

Rutger Jan Van der Gaag is Proessor o Clinical Child & Adolescent Psychiatry, University Medical Centre Nijmegen

St. Radboud and Medical Director and Head o Training o Karakter, University Centre or Child & Adolescent

Psychiatry, Nijmegen. President o the College o Psychiatry o the Royal Dutch College o Physicians, he serves as an

Advisor to several Parents and Patients organisation or individuals with Autism and Developmental Problems in theNetherlands and abroad.

Disclosures o potential conicts:

Pro. Barthélémy has no nancial relationships to disclose.

Dr. Fuentes serves as a consultant / member o the speaker’s bureau, and receives research support rom Eli Lilly and

Janssen-Cilag. He has received support or conerence attendance and educational events organization rom Eli Lilly,

Janssen-Cilag and Juste Laboratory.

Pro. Howlin receives royalties rom a number o publishers (including Wiley, Blackwell and Routledge) or books/

chapters on autism. There are no other nancial relationships to disclose.

Pro. Van der Gaag serves as a consultant / member o the speaker’s bureau or Eli Lilly and Janssen-Cilag, and receives

research support rom Eli Lilly.

ABOUT THE AUTHORS



INTRODUCTION ………………………………………………………………………………………… 2

IDENTIFICATION ………………………………………………………………………………………… 3

CLINICAL PRESENTATION ………………………………………………………………………………… 3

Disturbances in the Developmental o Reciprocal Social Interaction …………………………………… 4

Impairment o Verbal and Non-Verbal Communication ………………………………………………… 4

Restricted Repertoire o Interest and Behaviours ……………………………………………………… 4

OTHER IMPORTANT ASPECTS TO BE TAKEN INTO CONSIDERATION …………………………………… 5

Age o onset and impairment …………………………………………………………………………… 6

Clinical variants …………………………………………………………………………………………… 6

ASD and Strengths ……………………………………………………………………………………… 7

UNDERSTANDING ……………………………………………………………………………………… 8

THE UNDERLYING MECHANISMS ………………………………………………………………………… 8

WHAT IS KNOWN OF THE CAUSES? ……………………………………………………………………… 9

IDENTIFICATION AND DIAGNOSTIC ASSESSMENT …………………………………………………… 10

Early warning signs …………………………………………………………………………………… 10

Assessment process …………………………………………………………………………………… 11

INTERVENTION ………………………………………………………………………………………… 14

THE SUPPORT PLAN SHOULD EVOLVE AS THE INDIVIDUAL PROGRESSES

THROUGH THE LIFE CYCLE ……………………………………………………………………………… 17

IMPLICATIONS FOR PRACTICE ………………………………………………………………………… 20

SOURCES OF INFORMATION ………………………………………………………………………… 22

TABLE

AUTISM EUROPEaisbl



Until specic biological markers are identied, ASD continues to

be dened in terms o the behavioural symptoms displayed. These

eatures are listed in the international diagnostic and classication

systems: DSM IV, (American Psychiatric Association), and ICD 10,

(World Health Organisation). These classications are periodically

reviewed in order to incorporate new research data, and are essential

or individual clinical diagnosis and or the advancement o our eld.

The aim o this document on autism is not to act as a substitute or

these classications, but rather to complement them; going beyond

diagnosis and considering those issues o relevance or anyone

involved with or afected by this challenging condition. This document

is written within the connes o our present knowledge, and uture

research ndings may require its modication.

Although genetic actors play a major causative role, other multi-

actorial mechanisms are also involved in aetiology. The interaction

o all these actors may result in considerable diversity in the mani-

estation o the core clinical eatures. Given that autism is essentially a

developmental disorder, presentation will also vary with age, cogni-

tive and learning abilities and experience.

Clinical diagnosis should be a signpost towards efective interven-

tions and support, rather than a negative label, and should lead to

recognition o the particular abilities and needs o each individual.

Although there are certain key elements that are ound in most

successul programmes, there exists an extensive range o possible

therapies, many o which may be helpul or particular problems, or

or certain individuals. These possibilities should be considered when

personalised support plans are developed.

These plans must be subject to constant review and monitoring with

regard to their ecacy and also their appropriateness to the devel-

opment and circumstances o the individual. It is also important to

recognise that each individual is a member o a amily and o society

at large. All parties need to be encouraged and supported in the efort

to develop an environment that allows and encourages individuals

with ASD to ull their potential, enhance their happiness and the

quality o their lives.

Introduction

2

At present, Autism SpectrumDisorders (ASD) are diagnosedwith international diagnosticand classication systems. These systems are a checklist o behaviours. They are updatedwith new research data and areused by doctors or reerenceand individual diagnosis.

The current Document onAutism complements theseclassications. It considers otherimportant issues or anyonewith an interest in ASD.

Genetic actors are a majorcause o autism. The interactiono many other actors is alsoinvolved. Key eatures varygreatly rom one person to

another. They also vary withage, abilities and experience.

Clinical diagnosis should bethe basis or personalisedsupport plans. The range o existing proven therapies canbe considered in developing asupport plan that best reectsindividual abilities and needs.

Personalised support plansmust be reviewed andmonitored constantly as theperson develops and his/hercircumstances change.

Families and the communityalso need support in orderto create the best possibleenvironment or persons with

ASD to live well and developtheir potential.

P e r s o n s w i t h A u t i s m S p e c t r u m D i s o r d e r s



Although not universally accepted, the diagnostic labels o “Autism”

and “Pervasive Developmental Disorders” are being progressively

substituted by the term “Autism Spectrum Disorders” (ASD) to stress

two points: one, that we reer to specic disorders o social develop-

ment, and, two, that there is a marked heterogeneity in the presenta-

tion o ASD, ranging rom the ull clinical picture to partial expression

or individual traits that are related to ASD but do not merit clinical

diagnosis.

In considering the latest DSM IV TR classication manual, the ASD

concept does not include Rett’s Disorder, but includes Autistic Disorder,Asperger’s Disorder, Childhood Disintegrative Disorder and Pervasive

Developmental Disorder Not Otherwise Specied (Atypical Autism).

It is likely that uture revisions o classication systems (e.g. DSM V,

expected in 2012 rom the American Psychiatric Association) will

modiy the present classication and diagnostic criteria or all psychi-

atric conditions. This will probably involve the consideration o both

dimensional and categorical approaches to diagnosis, greater ocus

on developmental aspects and inormation derived rom neurobio-

logical and genetic sources, together with more detailed assess-ment o comorbid conditions. The World Health Organisation has

also begun an ambitious review o its current classication system

(ICD), aiming to submit the nal version or approval by the World

Health Assembly in 2014.

Despite the uncertainty o the uture diagnostic criteria, which will

have a key role in establishing the requency o these disorders, there

is now converging evidence that, using current diagnostic criteria,

many more individuals, in many diferent countries are being diag-

nosed with ASD. Rigorous surveys rom North America ound thatabout 1 in 150 8-year-old children in multiple areas o the United

Sates had an ASD. Epidemiological studies rom Europe point to a

similar gure among children (0,9 per 150, or 60 per 10.000). There are

no empirical data on the requency o ASD among adult populations,

although there are on-going studies to clariy this important question.

The over-representation o males (our to one) is conrmed, as well as

the presence o ASD in all social classes and diferent cultures.

CLINICAL PRESENTATION

The clinical expression o autism varies greatly, not only between

diferent individuals but also within the same individual over time.

Identifcation

3

The diagnostic term ASD isnow substituting “Autism”and “Pervasive DevelopmentDisorder” in order to stress:1) specic disorders o socialdevelopment, and 2) the greatvariety in individual symptoms.

The latest DSM IV TRclassication manual describes

disorders ound within therange o ASD.

Future revisions o classicationsystems will modiy the presentclassication and diagnosticcriteria or all psychiatricconditions on the basis o newresearch data rom diversesources.

The WHO is also reviewing itsclassication system (ICD). Thisshould be nalized in 2014.

Using current diagnosticcriteria, there is evidence thatmany more children are beingdiagnosed with ASD (1 in150). Figures or adults withASD are not yet available. It is

conrmed that ASD is presentin more boys than girls (4 to 1),and that it occurs in all socialclasses and diferent cultures.

Within the autism spectrum,eatures o behaviour varygreatly rom individual toindividual and also within thesame individual over time.





There is also individualdiversity in Intellectual ability- rom superior intelligence toproound retardation. However,many individuals are in thenormal range.

All cases present symptoms inthree diagnostic areas:

• Persons with autism can bequite indiferent or generallypassive in social interactions.Attempts by some to activelyrelate to others can be odd,one-sided and intrusive.Understanding o the reactionsand emotions o others islimited but most can showafection in their own way.

• The development of speech inASD also varies rom individualto individual. Some neverspeak, some begin to speak butregress. Others speak well buthave diculties in expressingand understanding abstractconcepts.

Language and emotionalreactions to others’ speechand body language tend tobe unusual with abnormaleatures.

In summary, socialunderstanding is dicult orthem. Persons with ASD haveproblems in understanding andsharing the emotions o othersand also in sel-expression and

sel-regulation o emotions.

Some symptoms may be more prominent and intense at one age

and may uctuate in nature and severity at another, leading to very

diferent clinical proles, yet all are expressions o the same spectrum.

In addition to variation in behavioural expression, there is also wide

diversity in cognitive ability, which can range rom average or even

superior intelligence to proound retardation. Although it was previ-

ously thought that the majority o individuals with autism were

severely intellectually impaired, recent research indicates that many

individuals have intellectual abilities in the normal range.

Despite this individual diversity, all cases present with clinical eatures

in three domains:

Disturbances in the Developmental o Reciprocal Social

Interaction

In some individuals there is signicant social alooness; others are

passive in social interactions, with only very limited or eeting interest

in others. Some individuals may be very active in their attempts to

engage in social interactions but do so in an odd, one-sided, intru-sive manner, without ull consideration o others’ reactions. All have in

common a limited capacity or empathy – although, again the extent

o decit is very variable- but most are able to show afection in their

own terms.

Impairment o Verbal and Non-Verbal Communication

The development o language in ASD is extremely variable. Some

individuals never acquire speech. Others begin to speak, but then,

(oten around the age o 18 months to 2 years) there may be a periodo regression. Other individuals appear to have supercially good

language but have diculties with understanding - especially o

more abstract concepts. In those who do learn to use language, both

receptive and expressive diculties are common. All individuals with

autism show some degree o diculty in reciprocal, to-and-ro inter-

actions with others. In both orm and content, language tends to be

unusual, and abnormal eatures include echolalia, pronoun reversal

and making up o words. Emotional reactions to verbal and non

verbal approaches by others are also impaired, and are oten charac-

terised by gaze avoidance, inability to understand acial expressions

or the messages conveyed by others’ body postures or gestures.




• Imaginative skills in childrenwith autism are oten limited. Their capacity or pretendplay and social play doesnot develop well. As a result,they have diculties inunderstanding or adapting tothe intentions and emotions o others, managing past eventsor anticipating the uture.

Behaviour is oten stereotypical,repetitive and ritualised.

Most children with autismdemonstrate strong resistanceto change and insistence onroutine. Their interests are otenspecic or unusual.

Many persons with autism over-

or under-react to tactile, auditoryand visual stimuli. They may alsohave unusual responses to heat,cold and/or pain.

Persons with autism may alsohave other problems suchas: anxiety, sleep problems,abnormal eeding patterns,severe tantrums and sel-

injurious behaviour.

Many persons with autismalso have other behaviouraland psychiatric problems orassociated disorders. These arecalled “Co-morbidities”.

“Co-morbidities” must be givenproper consideration.Assessment may indicate that

the environment or treatmentplan is unsuitable and shouldbe changed. In other cases, the

In summary, there are decits in all the behaviours required to

engage in and regulate reciprocal social interaction. There are oten

marked diculties in identiying, understanding and sharing others’

emotions; the individual’s own repertoire o expression and regula-

tion o emotions is also afected.

Restricted Repertoire o Interest and Behaviours

Imaginative skills are almost always impaired to some degree. As

children, most individuals ail to develop normal pretend play and

this, in turn, limits their capacity to understand and represent inten-tions and emotions in others. In some cases imaginative activity may

be present, indeed even excessive, but this does not lead to improved

unctional adaptation or participation in social play with peers. The

ailure to develop an inner representation o others’ minds also afects

the capacity both or anticipating what may happen in the uture and

or coping with past events.

Behavioural patterns are oten repetitive and ritualised. These may

include attachments to unusual and bizarre objects. Stereotyped,

repetitive movements are also common.

There is oten a strong resistance to change and insistence on

sameness. Even minor changes in the environment can cause

proound distress. Many children with autism, particularly those with

higher intellectual ability, develop specic interests or preoccupa-

tions with unusual topics.

O T H E R I M P O R T A N T A S P E C T S T O B E T A K E N I N T O

CONSIDERATION

Many individuals show hyper- or hypo-sensitivities to tactile, auditory,

and visual stimuli; there may also be unusual responses to heat and

cold and/or pain.

Other commonly associated, non-specic eatures include high levels

o anxiety, sleep problems, abnormal eeding patterns, sometimes

resulting in gastrointestinal disturbances (although these appear to

be associated more with developmental delay than to autism per se),

severe tantrums and sel-injurious behaviour.

Many individuals with ASD are afected by other behavioural and

psychiatric problems. These are reerred to as “Co-morbidities” and



include psychiatric disorders such as anxiety disorders (in up to 60%),

depression and other afective disorders, attention decit hyperac-

tivity disorder, obsessive-compulsive disorder, tics, catatonia and also,

although more rarely, substance abuse and psychotic breakdown.

A thorough assessment o these eatures is essential. Many such

problems (or example, depression or anxiety) may reect the

act that the environment is inappropriate, or the treatment plan

inadequate or someone with ASD. In these cases “comorbidities”

should be considered as “complications”, requiring careul reappraisal

o the intervention programme. In other cases, the associated disorders

will need treatment in their own right.

Age o onset and impairment

Although in most individuals ASD is present rom birth, the age at

which symptoms become clinically evident varies greatly. In classic

cases o ASD, such as described by Kanner, and especially when

associated with developmental delay, the rst signs will be evident

within the rst two years o lie. However, very young children who

do not have cognitive impairments, and particularly those who showno signicant language delays (or example those with Asperger

syndrome), may be able to unction relatively well in one-to-one

relationships at home, with sensitive, understanding adults. Recogni-

tion o their impairments may be delayed until the social demands

o school and the need to interact with their peer group become too

dicult or them to cope with.

The problems associated with ASD may also be compensated or,

at least partially, by higher intellectual ability, especially i this is

accompanied by special skills in certain areas. Many individuals withAsperger syndrome, or example, succeed well in technical elds such

as engineering or computer technology, and may simply be consi-

dered as somewhat eccentric or much o their lives. In such cases

the diagnosis may only be recognised i the individual later has a

child with ASD and that assessment reveals similar problems in the

parent as well. Alternatively, symptoms may become more apparent

when marital problems arise, due to the inability o the person with

Asperger syndrome to cope with the “normal” demands or intimacy

and companionship.

6

associated disorder itsel needstreatment.

ASD is normally present rombirth but the age at whichsymptoms become evidentvaries greatly.

In classical cases o autism signsare evident within the rst two

years o lie.

ASD in children with nointellectual problems orsignicant language delaysmay only be recognised whenchildren begin school and havediculties coping with thesocial demands o school andtheir peer group.

Persons with higher intellectualability and special skills incertain areas may simply beconsidered eccentrics or mosto their lives.

In these cases, ASD may onlybe recognised i the person hasa child with ASD or symptomsbecome more evident i theperson is unable to cope withmarital problems.

Currently, diferent clinicalorms o ASD are described:

• Autistic Disorder (see Kanner)- little or no speech or socialrelations; resistance to change;stereotypical behaviour, physicaldexterity and obsession with

parts o objects; occasionallyimpressive isolated skills.




Clinical variants

In the current literature and classication systems, diferent clinical

variants o ASD are described:

• Autistic Disorder is most closely related to Kanner’s descriptions of

individuals with severe impairments in social reciprocity, who are

mute or signicantly verbally impaired, and who show marked resis-

tance to change. These individuals also tend to show motor stereo-

typies, and oten motor dexterity, together with preoccupations with

parts o objects, and in some cases impressive isolated skills.

• Asperger syndrome is characterized by normal IQ and the acquisi-

tion o language at the normal age. However, pragmatic language

skills are typically impaired, and problems o social reciprocity and the

presence o preoccupations and ritualistic behaviours are similar to

those ound in autism more generally.

• Atypical autism and/or Pervasive Developmental Disorder- Not

Otherwise Specied (PDD-NOS) are diagnoses that tend to be given

when the ull criteria or ASD are not met (or example, when age o

onset is later than 3 years, or when symptoms are apparent in onlytwo o the 3 principal diagnostic domains). However, it is important

to recognise that the clinical impairment in such cases is by no means

mild. These individuals may sufer greatly rom their subtle symptoms,

partly because they oten receive little support or understanding, and

also because they may be acutely aware o their incapacity to relate

adequately to others. Their co-morbid anxieties and, sometimes, asso-

ciated bouts o aggression may pose severe problems to themselves,

to their amily and to others. Some also have problems with control-

ling their imagination and tend to be carried away by their vivid

thoughts. These cases have been well studied under the concept o Multiple Complex developmental disorders to help and speciy some

o the eatures o the “Not Otherwise Specied” areas o ASD.

ASD and Strengths

Although ASD is requently a clinically impairing disorder, there is no

doubt that many individuals with this condition have made signi-

cant contributions to the eld o science in particular. It is likely that

many technical developments such as computer technology could

not have taken place without the input o individuals with a highly

logical and ocussed style o conceptualisation and thought, and who

are not distracted by the need or social interaction.

7

• Asperger syndrome - normalIQ and speech development;reduced communication skills;problems with social relations,obsessions and ritualisticbehaviours.

• Atypical autism and/orPervasive DevelopmentalDisorder - Not Otherwise

Specied (PDD-NOS) - Thesediagnoses are given when theull criteria or ASD are not met. The symptoms are not mild butthese persons oten receivelittle support or understandingand may also be greatly awareo their incapacity to relate wellto others. Associated anxietiesand episodes o aggression canbe problematic or the persons

themselves, their amilies andothers. Some have problemscontrolling their imagination.

Many persons with ASD havemade signicant contributionsto the eld o science inparticular. They excel in areasthat require highly logical

thinking, such as computertechnology.

Research ndingsconsistently demonstratethat neurodevelopmentalabnormalities underlie manyo the core behaviouralimpairments o ASD.




Research fndings consistently demonstrate that neurodevelopmental

abnormalities underlie many o the core behavioural impairments o ASD.

THE UNDERLYING MECHANISMS

ASD are now viewed as a group o neurocognitive disorders that have

in common decits in processing socially related stimuli. Decits in

social-inormation processing afect individuals’ perception and under-

standing o the world around them and limit the capacity or under-

standing others’ thoughts, intentions and emotions (oten reerred to

as an inability to understand minds). Other common areas o decit

include executive dysunction, which afects organisational and

planning abilities. Problems with the modulation o sensory processes

(or example, vision, hearing, touch, pain) are also requently described

although the physiological basis or these phenomena remains unclear.

The presence o these severe and pervasive neurocognitive problems

may explain why individuals engage in restricted and repetitive activi-

ties in order to cope with an incomprehensible social environment. Thus,

as part o the diagnostic process, an assessment that provides insight in

the strengths and weaknesses o an individual with ASD is o paramountimportance. Such an assessment should include a prole o the indivi-

dual’s capacities on core psychological unctions such as general intel-

ligence, and strengths and weaknesses in areas associated with central

coherence (global versus detail oriented perception) and executive unc-

tioning (planning, organizing behaviour and activities). Such inormation

will help to tailor a personalised management plan that should include

general treatment strategies or ASD, but adapted to individual needs.

The underlying neurological causes o problems related to social

relationships, linguistic abilities and adaptation to change are underintense investigation. Diferent approaches combining clinical assess-

ment and biological studies suggest abnormalities in brain growth,

neural patterning and connectivity. Various possible candidate

regions or autistic dysunction have been located in the cerebellum,

the temporal lobe, usiorm gyrus, amygdale, the rontal lobes and the

white matter tracts o the corpus callosum. However, no one area has

been consistently implicated, and ndings rom neuroimaging studies

have oten ailed to be replicated. Research on neurotransmitters has

ocused mainly on serotonin and dopamine and more recently on

the glutamatergic synapses. Findings rom both neuroimaging and

neurochemistry are suggestive o early brain “network” dysunction

rather than o primary and localized abnormalities.

Understanding

8

Research demonstratesthat ASD is a group o developmental disordersafecting brain unctioning andin particular the processingo social inormation. Thisafects how a person seesand understands the worldaround them and the thoughts,intentions and emotions o

others. Persons with ASDare also limited in theirorganisational and planningabilities. Problems with sensoryprocesses are also requent.

Restricted and repetitiveactivities may be a wayo coping with what is anincomprehensible socialenvironment.

During diagnosis it is veryimportant to include a proleo the person’s strengths andweaknesses in problem areasin order to create an individualsupport plan that includesgeneral treatment or ASDbut is also adapted to theindividual’s needs.

Intense research is ongoinginto the neurological causes o the problems relating to socialrelationships, linguistic abilitiesand adaptation to change.

It would appear that autisticdysunction is not located inany one area o the brain.

Findings rom neuroimaging andneurochemistry suggest an earlybrain “network” dysunction.




WHAT IS KNOWN OF THE CAUSES?

Genetics strongly contribute to the pathogenesis o ASD. However

the clinical heterogeneity o ASD likely reects the complexity o its

genetic underpinnings, involving several genes and gene-environ-

ment interactions. In only approximately 10% o all ASD cases can

an associated cause be identied. These include genetic disorders

(Fragile X syndrome, neurobromatosis, tuberous sclerosis, Angelman

syndrome, Cornelia de Lange, Down Syndrome, untreated phenylke-

tonuria), chromosomal rearrangements (detectable by karyotyping)

or rare environmental events (prenatal CNS inection by rubella orcytomegalovirus, prenatal exposure to valproic acid or thalidomide).

The recent advent o genome-wide techniques has allowed the iden-

tication o small deletions and duplications, well below the threshold

o detection by standard procedures, and has already identied a

large number o potentially important novel candidate loci. These

techniques also suggest that in many cases new genetic mutations

may be a causative actor, and that not all cases result rom inherited

actors.

Multiple parallel approaches are necessary to advance our under-standing o the genetic actors underlying ASD. Both large well charac-

terized patient cohorts and single cases where a major gene efect can

be identied have to be recruited.

Research in this eld is necessary and parents’ associations should

encourage participation in scientically sound projects on the condi-

tion that appropriate bioethical committees have approved them.

In summary, the evidence or a biological, organic causative mech-

anism or autism is now overwhelming, conrming that there is nocausative link between parental attitudes and actions and the deve-

lopment o autism spectrum disorders.

9

Genetics are an importantactor in the origins o ASD.

The clinical diversity o ASD reects the complexinvolvement o several genesand gene-environmentinteractions.

A specic cause is only

identied in 10% o ASD cases.

Genome (DNA) researchtechniques have identiedsmall deletions andduplications, a large numbero important loci (place a geneoccupies on a chromosome)and new genetic mutations ascausative actors.

Both large patient groupresearch and single casestudies are necessary to betterunderstand how genetic actorscause ASD.

Parents’ associations shouldencourage participationin scientically sound andbioethically approved projects.

In summary, the mass o evidence conrms that autismis caused by a biological,organic mechanism. It alsoconrms that parental attitudesand actions do not cause thedevelopment o ASD.




IDENTIFICATION AND DIAGNOSTIC ASSESSMENT

The principal eatures o autism are described in the clinical presentation

section. In the frst year o lie there may be no obvious signs o abnor-

mality, but by 18 months to two years defcits in the ollowing areas

should prompt reerral or a general developmental assessment:

Communication: e.g. ailure to respond to name, impaired under-

standing, delayed or unusual use o language, impaired response to/

use o non-verbal communication, lack o appropriate gaze, lack o

response to contextual clues, lack o showing or pointing.

Social: e.g. lack o response to/interest in others; ailure to imitate;

impairments in social interaction and lack o social awareness; limited

pretence and imaginative play; ailure to understand/respond to

emotions in others, ailure to express emotional warmth or pleasure,

lack o sharing interest or enjoyment.

Repetitive and stereotyped interests: e.g. unusual sensory

responses; motor mannerisms or posturing o body; resistance to

change; repetitive movements with objects, repetitive play.

Early warning signs

Recent studies have suggested that the “red ags” o which parents

and physicians should be aware include: poor eye contact; reduced

responsive smiling; diminished babbling; reduced social responsive-

ness, and diculties with language development, play and initiating

or sustaining social interaction.

Experts also recommend that any o the ollowing signs are absoluteindicators o the need or a general developmental assessment:

• No babble, pointing or other use of gesture by 12 months

• No single words by 18 months

• No spontaneous 2-word phrases by 24 months

• Any loss of language or social skills at any age

However, it is important to recognise there are no single pathogno-

monic symptoms that are indicative o ASD (i.e. there are no sine-qua-

non symptoms) and that the absence o any o the above eatures

does not rule out a possible diagnosis. In other words, there is great

clinical diversity, but all those afected with ASD will share the constel-

0

Communication: ailure torespond to name, dicultiesin understanding, verbal/non-verbal language, gaze, gesture

Social: lack o interest in others,imitation, interaction, play,emotions, sharing

Repetitive and stereotyped

interests: unusual sensoryresponses, mannerisms,resistance to change, repetition

“Red ags” or parents anddoctors include: poor eyecontact, reduced responsivesmiling, diminished babbling,reduced social responsiveness,diculties with language, playand starting or maintaining

social interaction.

The ollowing signs indicatethat a general developmentalassessment is absolutelynecessary:

• No babble, pointing or otheruse o gesture by 12 months

• No single words by 18 months• No spontaneous 2-word

phrases by 24 months• Any loss of language or social

skills at any age

No one single symptom ischaracteristic o ASD. Theabsence o any the abovedoes not rule out a possiblediagnosis.

I ASD is suspected, the childhas the right to a thoroughassessment. This is important




lation o core socio-communication and behavioural symptoms.

Each individual in whom a disorder within the autistic spectrum is

suspected is entitled to a thorough clinical and medical assessment.

The assessment is o great importance in order to make an accurate

diagnosis, to identiy individual needs, and to ensure that interven-

tion is put into place to meet these needs.

The general developmental assessment should include:

• a detailed history of all the signs that cause concern to parents

• a developmental history (including ante- and pre-natal history andany relevant amily history)

• physical and developmental examination (i.e. assessment of

physical, cognitive and language development; exploration o other

possible genetic disorders such as ragile X, tuberous sclerosis)

• assessment of family circumstances and social needs.

I the general developmental assessment indicates the need or an ASD

specic assessment urther screening instruments may be employed.

There is no rm evidence on which to recommend any one specic

instrument, but the Social Communication Questionnaire correlateswell with more detailed autism assessments. Other requently used

instruments include the M-Chat, the CAST and the ESAT.

Assessment process

Once the presence o an ASD is suspected the child should be reerred

or a multi- disciplinary assessment, in which all members o the team

should have some ASD training and at least one member should be

trained in the assessment and diagnosis o ASD using standardised

assessments. The multi-disciplinary team should have access to inputrom psychologists, educationalists, language therapists, paediatri-

cians and/or child psychiatrists, occupational and physio-therapists

and social services support.

For the purposes o assessment the individual should ideally be

observed in a number o diferent settings, both structured and

unstructured (e.g. in clinic, home setting, nursery/schools, day care

centre etc.) Videos may be used i direct observations on site are not

possible.

11

or accurate diagnosis, toidentiy individual needs andensure prompt intervention.

The general developmentalassessment should include:

• a detailed history of all aspectsworrying parents

• a developmental history

• physical / developmentalexamination

• assessment of familycircumstances and social needs

I this assessment indicatesthe need or an ASD specicassessment, urther specicscreening must be carried out.Frequently used assessmentinstruments include the SCQ,

M-Chat, CAST and ESAT.

ASD assessment is multi-disciplinary. All members o themulti-disciplinary team shouldhave ASD training. At least onemember should have specictraining in ASD assessment anddiagnosis using standardisedinstruments. The team should

have access to input rom otherproessionals.

Ideally, the child shouldbe observed in a numbero diferent structured andunstructured settings.

The assessment itsel shouldinclude:

1) Standardised autism specicassessment




The assessment itsel should include:

1) Standardised autism specic assessment

Among the best validated o such assessments are the Autism Diag-

nostic Observation Schedule; the Autism Diagnostic Interview-

revised; the Diagnostic Interview or Social and Communication

Disorder; and the Developmental, Dimensional and Diagnostic Inter-

view (3di). Other assessments include the Behavioural Summarized

Evaluation and the Childhood Autism Rating Scale.

It is recognized that not all services will have access to these specia-

lized instruments. The cost and time involved in completing such

assessments may also be impractical or some hard-pressed services.

However, having at least one staf member trained in the use o such

instruments is important in ensuring that the diagnostic assessment

covers the principal areas related to ASD (communication, social and

repetitive/stereotyped behaviours) and that interviews are conducted

in as systematic and structured way as possible.

2) Cognitive assessment

A variety o diferent tests is available depending on the child’s age andability level. The best standardised assessments include the Wechsler

tests (WPPSI, WISC, WAIS, and WASI) which span the age ranges o 3

to 60+). For younger children the Mullen Scales o Early Learning or

the Bayley scales may prove useul. When direct testing is not possible

or any reason the Vineland Adaptive Behaviour Scales can provide

detailed inormation, based on parental report, on the individual’s

communication, social and adaptive behaviour skills.

3) Language assessment

Again a variety o diferent tests is available, and the choice willdepend on age and ability o the person with autism. However, many

language tests assess a relatively circumscribed area o language and

it is important to include assessments o comprehension, expression

and pragmatic use o language in order to obtain a ull assessment o

the individual’s unctional communication skills. Assessments o play

ability may also provide valuable inormation on the child’s “internal

language” or imaginative ability.

4) Physical and medical assessment

Each child should undergo a thorough medical examination. This

should include assessment o visual and auditory acuity; height,

weight and head circumerence. Inormation about eating, sleeping,

2

There are a number o specialised assessmentinstruments.

It is important to ensure thatdiagnostic assessment coversthe main areas related toASD. Interviews must be assystematic and structured aspossible.

Despite possible problemso access, cost and time, it isimportant that services haveat least one member o staf trained in the use o ASDspecic instruments.

2) Cognitive assessment

A variety o standardised tests

is available depending on thechild’s age and ability level.

I direct testing is not possible,the Vineland AdaptiveBehaviour Scales can provideinormation.

3) Language assessment

A variety o diferent tests isavailable, depending on ageand ability.

Full language assessmentmust include unctionalcommunication skills.Assessments o play abilitymay also provide importantinormation.

4) Physical and medicalassessment




bowel and bladder control and possible epilepsy should also be

obtained. A ull neurological examination should be conducted i

there is evidence o regression, ts, skin lesions, or signicant hearing,

visual or learning diculties. A detailed neurological assessment is

not recommended as a routine part o the diagnostic assessment,

but i evidence o a neurological disorder is apparent additional tests

might include genetic testing (or Fragile X, Rett syndrome, etc); lead

screening (in cases o pica), or EEG or suspected epilepsy. Some

investigations are warranted only i there are specic indicators. Thus,

neuroimaging techniques (Magnetic resonance imaging, compu-

terised tomography, etc) are unnecessary unless there are specicneurological indications, such as a possible diagnosis o tuberous

sclerosis. Routine testing o the gastro-intestinal tract, vitamin levels,

or other metabolic unctions is not advised unless there are specic

indications o abnormalities in these areas.

5) Behaviour and mental health assessment

The assessment should cover behavioural and psychiatric symptoms

(e.g. anxiety, mood disturbance, ADHD, impulsivity, conduct disorder,

OCD, tics, etc.) especially in school age children. Conducting a unc-

tional analysis o the underlying causes o behavioural problems mayalso prove valuable in helping to establish why, when and where di-

culties occur, and in suggesting alternative approaches that will help

individuals with ASD to cope with the challenging environments in

which they nd themselves.

6) Family unctioning

Assessment o the needs and strengths o amily members is an impor-

tant part o the assessment process, and is essential or the develop-

ment o appropriate and successul intervention strategies.

In summary, the diagnosis o ASD should only be made on the basis

o a thorough clinical assessment, conducted by proessionals with

training in the eld o autism and with a range o skills (medical,

psychological, educational, and social).

The purpose o the assessment is not only to establish, with as much

certainty as possible whether or not an individual meets criteria or

ASD, but to ensure that this process leads to intervention and educa-

tional programmes that are appropriate or the needs o the child and

those o his or her amily.

13

Each child should undergo athorough medical examination.

A routine neurologicalexamination should be carriedout.

Complementary neurologicaltests are not routine and shouldonly be carried out i there is

specic evidence to supporturther investigation.

For the same reasons, routinetesting o the gastro-intestinaltract, vitamin levels, or othermetabolic unctions is notadvised or autism. 5) Behaviour and mental healthassessment

This should cover behaviouraland psychiatric symptomsespecially in school agechildren. Functional analysiso behaviours can helpunderstand the situations inwhich diculties occur andindicate approaches to helppersons with ASD cope with

their environment.

6) Family unctioning

Assessment o the needs andstrengths o amily members isessential or the developmento the best possibleintervention strategies.

In summary, diagnosis o ASD

requires thorough clinicalassessment by trained ASDproessionals with diferent skills.




There is, as yet, no cure or ASD. Fortunately, however, there is strong

evidence that appropriate, lielong educational approaches, support

or amilies and proessionals, and provision o high quality commu-

nity services can dramatically improve the lives o persons with ASD

and their amilies. Since the rst Autism Europe Description o Autism

published in 2000, the situation has greatly changed.

We now have updated good-practice guidelines produced by expert

committees in Europe. These include the National Institute o Health

o Spain and the Scottish Intercollegiate Guidelines Network, which

have reviewed all available evidence or the great variety o treat-

ments advocated or ASD. The UK Departments or Education and

Skills and or Health have also produced good-practice guidance or

the education o students with ASD.

These position statements coincide well with similar guidelines

arising rom other parts o the world, such as the U.S.A., Canada and

Australia. It can be said, without ambiguity, that we now have a shared

vision on treatment or persons with ASD. In consequence, those indi-

viduals and organizations that propose radically contrary approaches

must assume the moral and legal responsibility that results rom prac-ticing outside the main ramework now accepted by the most pres-

tigious and responsible proessional bodies o the world. Those who

ignore these well established guidelines run the risk o being accused

o discriminating against citizens with ASD, and o preventing them

rom accessing their basic human rights to health and education.

We have learned much over the past ew years about those practices

that are supported by current scientic knowledge and those that are

not, and about which programmes make a real diference to the lives o

individuals with ASD. Unortunately, this knowledge has not yet beenincorporated into general practice across Europe. Thus, there remains

an unethical gap between knowledge and opportunities, and it is still

evident that very ew European citizens with ASD receive the state-o-

the-science support to which they could and should be entitled.

Recent reviews o the evidence base or interventions or persons

with ASD conclude that relatively ew treatment programmes meet

the methodological criteria that are necessary when assessing the

value o medically based interventions (such as drugs, etc).

Nevertheless, the evidence base or a range o diferent interventions

is improving, with growing numbers o well conducted comparison

studies. Randomised control trials, considered as the “gold standard”

Intervention

4

Diagnosis and assessment mustlead to all-inclusive interventionand educational programmesappropriate or the individualneeds o the child and those o his/her amily.

There is no cure or ASD butwe can dramatically improvequality o lie. Updated good-

practice expert guidelines arenow available in Europe.

They correspond to similarguidelines rom other parts o the world.

This means there is aworldwide, shared vision ontreatment or persons with ASD.

Individuals or organisationsmust assume moral andlegal responsibility i theypropose approaches outsidethe established guidelines. They may be accused o discriminating against citizenswith ASD and preventing theiraccess to basic human rights o health and education.

We now know which practicesare supported by currentscientic knowledge andwhich programmes are best orpersons with ASD.

This knowledge has not yetbecome general practice inEurope and there are still ewopportunities or European

citizens with ASD to receive thesupport they are entitled to.




in medical research, are also increasing in number. However, even

when outcome is ound to be positive, most research still ocuses on

very short term goals and on a limited number o outcome measures.

There is little attempt to address questions such as whether treat-

ment succeeds in maximising the long-term potential o the individ-

uals involved, or i it truly improves the quality o lie. Such issues may

require very diferent evaluation strategies such as external audits and

reviews, systematic analysis o problems, and measures o personal

satisaction. It is also crucial to collect the views o individuals with

ASD themselves on whether treatment has helped to enhance sel-

esteem, sel-determination and their perceptions o social inclusion.

The American Psychological Association has proposed that evidence

based psychological practices should be those that integrate the

evidence generated by research together with the clinical judgment

o experienced proessionals, and within the ramework o the char-

acteristics o the individual with ASD, his or her culture and individual

preerences.

To date, programmes involving behaviourally based approaches to

intervention, those designed to improve parent - child interaction,and those with an emphasis on developing social and communica-

tion skills appear to have the strongest evidence base (at least in the

short term).

However, there are many other elements that are essential to improve

longer term outcome.

1. Education – as early as possible, with special attention to social,

communication, academic and behavioural development, provided

in the least restrictive environment by staf who have knowledge andunderstanding both o autism and the individual student;

2. Accessible community support in terms o appropriate, well-

inormed multi-agency services that will help each individual to

realise his or her own potential and lie-time goals (either chosen by

the individuals themselves, or those who know, love and legally repre-

sent them);

3. Access to the ull range o psychological and medical treatments

(adapted as necessary to meet the needs o individuals with ASD) that

are available to the general population.

15

Few treatment programmesmeet the methodologicalcriteria necessary to assess theirscientic value.

Evidence-based research isincreasing and is becomingmore rigorous but it still ocuseson very short-term goals anda limited number o outcome

measures.

Diferent research strategiesare necessary to study whethertreatment maximises long-termpotential and improves qualityo lie. They must include theviews o persons with ASD.

Evidence-based psychologicalpractices should integrate

research evidence, the clinical judgement o experiencedproessionals and the cultureand individual preerences o the person with ASD.

The strongest, evidence-basedprogrammes to date ocus onbehaviour, parent - child relationsand communication skills.

There are many other elementsessential or better, longer-termoutcome:

1. Education - an early start,attention to all areas o development, least restrictiveenvironment, staf amiliar withASD and the child;

2. Accessible communitysupport - well-inormed multi-agency services where a person




Those interventions that are best supported by the evidence as being

examples o good practice include our undamental principles:

1. Individualization: There is not, nor could there ever be, a single

treatment that is equally efective or all persons with ASD. Diversity

in the spectrum as well as individual skills, interests, lie vision and

circumstances mandate personalisation.

2. Structure: This requires adapting the environment to maximize

each individual’s participation by ofering varying degrees o predict-

ability and stability, more efective means o communication, esta-

blishing clear short and long-term goals, dening the ways in which

these goals can be met and monitoring the outcome o the methods

chosen to meet these goals.

3. Intensity and generalisation: The interventions used should not be

sporadic or short term, but applied in a systematic manner on a daily

basis, across diferent settings, and by all those living and working

with the person with autism. This will ensure that the skills acquired

in more structured settings can be maintained in real lie situations as

well. Those responsible or carrying out the intervention should alsohave access to appropriate support and guidance rom proessionals

with expertise in ASD.

4. Family participation: Throughout childhood, and beyond, parents

must be recognised and valued as the key elements o any interven-

tion programme. Inormation, training and support, always within the

context o amily values and culture, should be the common denomi-

nator o any proessional intervention. Other important sources o

support, such as babysitting, respite care, short breaks, or tax benets

should be available to avoid the discrimination that many o theseamilies still ace across Europe. Adequate support or social, medical

and educational services is necessary to ensure that they are able to

enjoy the same quality o lie as other citizens.

People interested in nding out more about the European good

practice guidelines mentioned above or obtaining inormation about

specic interventions or treatments, can access this or ree rom the

Internet address listed in the section Sources o Inormation. There are

diferent guidelines in English, Spanish and French.

6

with ASD can realise theirpotential and goals;

3. Access to all generallyavailable psychological andmedical treatments.

To be examples o goodpractice, interventions mustinclude our undamental

principles:

1. Individualisation: to reectdiversity in the spectrum andindividual diferences.

2. Structure: adapting theenvironment and monitoringmethods to maximiseparticipation.

3. Intensity and generalisation:long-term, systematic, dailyinterventions in diferentsettings and involving all thosein contact with the personwith ASD ensures that skillslearnt can be transerred toreal lie situations. Support andguidance rom proessionals inASD or those responsible orinterventions.

4. Family participation:parents are key elements inany proessional interventionprogramme and must receiveinormation, training andsupport that respects amilyvalues and culture. Otherpractical support is necessary toavoid discrimination and ensure

the same quality o lie as otherEuropean citizens.




THE SUPPORT PLAN SHOULD EVOLVE AS THE INDIVIDUALPROGRESSES THROUGH THE LIFE CIRCLE

Early Childhood

In this period the principal ramework or intervention is the normal

developmental process and the goal will be to parallel this as much

as possible.

As soon as the diagnosis is made, a thorough unctional assessment

should be completed and a treatment plan implemented. A number o studies now demonstrate the benets o early intervention, although

there is great variation in outcome. Parents need continuous inorma-

tion and personal support ater the diagnosis has been made. The

contributory value o sel-help organisations such as parents’ associa-

tions is evident.

There is also a real need or home-based programs or challenging

situations, something rarely available in the majority o European

countries.

Families and good nursery provision can, and should play a crucial

role in counteracting social isolation and withdrawal by encouraging

imitation and shared attention, promoting communication and

ostering the development o social skills. There are also many other

aspects to be considered in the personalised plan o young children

with ASD. In particular, special attention should be given to crucial

aspects o daily lie at this age, such as eeding, eating, toilet training,

sleep, play and behaviour.

School-age Children

At this age the establishment o an appropriate, individually tailored,

educational curriculum will constitute main ocus o intervention.

The diversity o students with ASD makes it necessary to have access to

a wide spectrum o educational possibilities. Although the European

Union avours integration and mainstream school, this must not

mean that students are let unsupported with untrained personnel. A

balance should be sought or each individual depending on the local

conditions and available possibilities, but the 2006 Autism Europe

Position Paper on Education constitutes a undamental ramework

detailing the way to go ahead.

17

You can read about theEuropean good practiceguidelines, specicinterventions and treatmentson Internet. See the Sources o Inormation section.

Early Childhood

Intervention and goals reer

to the normal developmentalprocess.

Full unctional assessmentand the implementation o atreatment plan must ollowdiagnosis. Early interventioncan be benecial. Parents needcontinuous inormation andsupport. Sel-help organisationscan contribute in this.

Home-based programs orchallenging situations areneeded.

Families and good nurseriesplay a crucial role in stimulatingpretend and social play,communication and social skills.

Personalised plans should alsoocus on the activities o daily lie.

School-age Children

Intervention is based on anappropriate, individualised,educational curriculum.Students with ASD need awide choice o educationalpossibilities.

The European Union avoursintegration and mainstreamschooling.




Clearly, emphasis should be placed on training proessionals to

understand ASD and helping the child with autism to benet rom

the input o other students. There have been signicant advances in

educational technology over recent years and these deserve to be

widely implemented. The application o visually supported learning,

making use o inormation technology, unctional curriculum, struc-

turing o time and domestic environment, and peer tutoring can all

help to make the school years optimally productive or the child with

ASD and or his or her peers.

It is crucial that during the school years the student with autism

acquires the skills that will be important in later lie. To achieve this

it is essential to involve the amily, to adapt study materials to suit

individual needs, to oster participation between the individual with

autism and his or her peers in many diferent environments and to

help establish social networks.

Adolescence and Adulthood

At this stage the treatment plan should be ecologically-based, leading

to the achievement o those unctional aspects required or an inde-pendent lie and or participation in the social community as an adult.

For those individuals with co-morbid intellectual disability it is impor-

tant that, while considering the limitations posed by mental age, the

personalised plan should also be appropriate to chronological age as

ar as possible.

Adulthood is the longest period o lie. It is o paramount importance to

ensure that an array o services (based upon an up-to-date knowledge

o autism) is accessible to individuals with autism and that these servicesreect the exibility required by the diversity o adults with ASD.

The ‘adult’ treatment plan must ocus on:

• Access to living/housing facilities with a support network ranging

rom residential care, through sheltered housing options, to intermit-

tent support or independent living.

• Occupational possibilities must also encompass a wide range,

including structured day-care centres, sheltered and specialist employ-

ment, to ully integrated employment with any necessary additional

support.

8

The 2006 Autism EuropePosition Paper on Education isa undamental ramework o reerence.

Proessionals should be trainedin ASD and students with ASDhelped to benet rom inputrom peers.

The implementation o recenteducational technology andthe application o proveneducational approaches canmake school a productiveenvironment.

During the school years thestudent with ASD must learnthe social and practical skills he/she will need in later lie.

Adolescence / Adulthood

The treatment plan shouldocus on the unctions neededor the adult with ASD to beindependent and participate inthe social community.

For persons with co-morbidintellectual disability, thepersonalised plan must reectchronological age and not onlymental age.

A variety o services must beavailable or adults with ASDand reect the diversity withinthis group.




• The need for on-going, permanent education and access to support

to enable participation and inclusion within community lie.

• Empowerment for self-advocacy and representation, and, if required,

access to the legal protection and benets established by European

laws or citizens with disabilities.

It is also crucial to recognise that as individuals with ASD grow older

and enter retirement, the needs or specialist support will not disap-

pear and an age appropriate plan will have to be developed and

maintained.

Emphasis, throughout the whole cycle, should ocus on quality o

lie. The dimensions considered in this concept or individuals with

intellectual and developmental disabilities, such as ASD include:

emotional welare, personal development, interpersonal relations,

physical welare, material welare, sel-determination, inclusion and

human rights.

19

The personalised ‘adult’treatment plan must ocus on:

• Access to housing/livingacilities with a range o supportnetworks

• Occupational activities andemployment

• Ongoing, permanenteducation

• Support in making personaldecisions and acting andspeaking or one’s sel; access tolegal protection and benets.

Older and retired persons withASD still need specialist supportand an age appropriate plan.

At all ages, the ocal pointshould be Quality o Lie.




IMPLICATIONS FOR PRACTISE

The advancement o science in ASD in Europe proceeds in parallel

to the development o the European Union, a multinational struc-

ture that according to the 1997 Amsterdam Treaty was ounded on

the principles o liberty, democracy, respect or human rights and

undamental reedoms, and the rule o law. This approach constitutes

a unique venture in the history o the world and osters a positive

consideration o persons in general, and persons with disabilities.

Thus, the Treaty o Lisbon, approved in 2007 and pending ratication

by Ireland and the Czech Republic, reers to the Charter o Human

Rights, describing six o them: dignity, reedoms, equality, solidarity,

citizen’s rights and justice. Article 26 o the equality section reviews the

integration o persons with disabilities, stating that the Union recog-

nises and respects the right o persons with disabilities to benet rom

measures designed to ensure their independence, social and occupa-

tional integration and participation in the lie o the community.

The resolution ResAP o the Council o Europe on the education and

social inclusion o children and young persons with ASD mandatesthe member states to adopt legislation and policies to mitigate the

efects o the disorder and to acilitate social integration, improve

living conditions and promote the development o independence

o individuals with this disorder, by providing equality o opportu-

nity and appropriate educational interventions. Eighteen excellent

specic recommendations are dened.

Autism Europe adopts the view that persons with disabilities are

citizens with equal rights and plays a major role in the European

Disability Forum (EDF). Equality o opportunity is the objective o the European Union strategy on disability and several instruments

have been established such as the EU Disability Plan to mainstream

disability issues into relevant Community policies and to develop

concrete actions in crucial areas to enhance the integration o persons

with disabilities.

Although the member states have the responsibility to apply, as part

o their national policies, the principles dened by the Union, both

individuals and organisations can submit a complaint to the European

Committee o Social Rights i they consider that their rights are not

ully respected.

0

In Europe scientic advancesin ASD go hand in hand withthe development o theEuropean Union (EU) oundedon the principles o the 1997Amsterdam Treaty that adoptsa positive approach to personsin general, and persons withdisabilities.

Article 26 o the equalitysection o the 2007 Treaty o Lisbon reviews the integrationo persons with disabilities andrecognises their right to benetrom measures to ensure theirindependence, integration andparticipation in all activities o the community.

The Council o Europe

resolution ResAP on theeducation and social inclusiono children and young personswith ASD denes 18 specicrecommendations on equalityo opportunity and education.

Autism Europe has a majorrole in the European DisabilityForum (EDF) and believesthat persons with disabilitiesare citizens with equal rights.Equality o opportunity is theobjective o the EU disabilitystrategy.

Member states have theresponsibility to apply theprinciples dened by the EU.

I an individual or organisationbelieves their rights are notrespected, they can submit




This ramework, established by the Union, constitutes an excellent

background in which new advanced State policies can develop.

Persons with ASD and their representatives need to remember that

today the EU is not only concerned with economic matters, but also

with social policy and human rights.

Some degree o social activism or ASD is required in the 27 countries,

and there are three particular areas where action is needed.

1. The needs o persons with autism require multi-agency involvement

in lie long planning. Interagency working is crucial and is particularlyimportant at the pre-school age and at the transition to adult services.

In order to provide a comprehensive service statutory, voluntary and

independent providers need to link and liaise across organisational

boundaries, but in practice, there remain tremendous challenges in

most European countries when inter-agency coordination is required.

2. The second aspect relates to pursuing quality in the management

o the organizations and systems that provide support. However, the

intention to improve quality is not enough, and must be linked to the

necessary structures and acilities to achieve this. In our eld we canprot rom a specic European model, the EFQM, that denes the

undamental principles o total quality: leadership and consistency o

objectives; client-oriented and result-oriented, development; learning,

innovation and continuous improvement; development o alliances;

management by processes and acts, and social responsibility.

3. The third aspect reers to the person-centred approach, empow-

ering the person to decide on his or her lie goals (or empowering,

in the case o associated intellectual disability, his or her riends and

legally authorized representatives to do so with justice and respect),with exible support networks and a personalized budget. This is

viewed as the cornerstone or a practice that will ensure each person

rights and optimal quality o lie, always guided by undamental

ethical guarantees.

To conclude - the time to consider support or persons with ASD as

an optional charity is gone. By ostering transnational research and

community based universal services, that are afordable, accessible

and o high quality, we are not only providing individuals with ASD

with the support to which they are entitled as ull citizens, but we are

also adding economic and societal wealth to the European Union as

well as value to our own lives.

21

a complaint to the EuropeanCommittee o Social Rights.

Today the EU is involved insocial policy and human rights.

Social activism or ASD in the 27EU countries is needed in theollowing 3 areas:

1. Multi-agency involvementin lielong planning. Providers’organisational boundariesneed to be removed in order tocoordinate all-inclusive services. This is o particular important atpre-school age and at transitionto adult services.

2. Quality in the managemento the organisations and

systems that provide support. This must be structured andmonitored. A specic Europeanmodel, the EFQM, denes theundamental principles o totalquality and is suitable in theeld o ASD.

3. A person-centred approach:deciding lie goals personally

(or by an entrusted person),exible support networks, ownbudgets. This is the cornerstoneor ethically based practice thatensures a person rights andbest quality o lie.

To conclude - persons with ASDare ull EU citizens. Support isnot charity. Appropriate, highquality support is a right and

is also an added value or thecommunity.




Sources o inormation

2

INTRODUCTION

American Psychiatry Association (2000), Diagnosis and Statistical Manual o

Mental Disorders, Fourth Edition, Text Revisión. Washington, DC, American

Psychiatric Association.

World Health Organization. International Classication o Diseases and

related Health Problems, 10 Revision, Version or 2007. http://www.who.int/ classications/apps/icd/icd10online/

Barthélémy C et al. (2000), Description o Autism. International Association

Autism Europe, Brussels, Belgium.

CLINICAL PRESENTATION

Chakrabarti S, Fombonne E. (2005), Pervasive developmental disorders in

preschool children: conrmation o high prevalence. Am J Psychiatry 162:1133-41.

Baird G et al. (2006), Prevalence o disorders o the autism spectrum in a

population cohort o children in South Thames: the Special Needs and Autism

Project (SNAP). Lancet 368 (9531):210-5.

Fombonne E. (2008), Is autism getting commoner?. Br J Psychiatry 193(1):59.

Klin A et al. (1995), Multiplex developmental disorder. J Dev Behav Pediatr 16 (3Suppl):S7-11.

Hutton J et al. (2008), New-onset psychiatric disorders in individuals with autism.

Autism 12:373-90.

Mouridsen SE et al. (2008), Psychiatric disorders in individuals diagnosed withinantile autism as children: a case control study. J Psychiatr Pract 14:5-12.

Mouridsen SE et al. (2008), Psychiatric disorders in adults diagnosed as children

with atypical autism. A case control study. J Neural Transm 115:135-8.

Van Engeland H, Buitelaar JK. Autism Spectrum Disorders. In: Rutter M et al.

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UNDERSTANDING

Coleman M. (2005), The neurology o autism. Oxord University Press

Freitag C.M. (2007), The genetics o autistic disorders and its clinical relevance:a

review o the literature. Mol psychiatry 12: 2-22.

Frith U. (2001), Mind blindness and the brain in autism. Neuron 32: 969-79.

Happé F et al. (2006), Time to give up to a single explanation or autism. NatureNeuroscience, (2006), 9: 1218-1220.

Herbert MR. (2005), Large brains in autism: the challenge o pervasive abnormality.

The Neuroscientist 11: 417-440.

Hill E.L. (2004), Executive dysunction in autism. Trends Cogn Sci 8: 26-32.

Mhule R et al. (2004), The genetics o autism. Pediatrics 113: 472-486.

Persico AM, Bourgeron T. (2006), Searching or ways out o the autism maze:

genetic, epigenetic and environmental clues. Trends in Neurosciences 29: 349-358.

Rapin I, Tuchman RF. What is new in autism? (2008), Current opinion in Neurology

21: 143-149.

Rizzolatti G, Fabbri-Destro M. (2008), The mirror system and its role in social

cognition. Neurobiology 18: 1-6.

Steyaert JG, De La Marche W. (2009), What’s new in autism? Eur J Pediatr 167:

1091-101.

IDENTIFICATION AND DIAGNOSIS

The National Autism Plan or Children (NAPC) (2003). National Initiative: Autism

Screening and Assessment. London: National Autistic Society & Royal College o

Psychiatrists.

Hernández JM et al. (2005), Best practice guidelines or the early detection o

autistic spectrum disorders (in Spanish). Rev Neurol, 41: 237-45. In: http://www.

neurologia.com

Díez-Cuervo A et al. (2005), Best practice guidelines or the diagnosis o autisticspectrum disorders (in Spanish). Rev Neurol, 41: 299-310. In: http://www.

neurologia.com

Landa R, Garrett-Mayer E. (2006), Development in inants with autism spectrum

disorders: a prospective study. J. Child Psychology & Psychiatry 47: 629-638.

Filipek PA et al. (2000), Practice parameter : screening and diagnosis o autism:

report o the Quality Standards Subcommittee o the American Academy o

Neurology and the Child Neurology Society. Neurology, 55: 468-79.

Berument SK et al (1999), Autism Screening Questionnaire: diagnostic validity.

British Journal o Psychiatry 175: 444-51.

Baird G et al. (2001), Screening and surveillance or autism and pervasive

developmental disorders. Archives o Disease in Childhood 84: 468-475.

Baron-Cohen S et al. (2000), The early identication o autism: the Checklist orAutism in Toddlers (CHAT). Journal o the Royal Society o Medicine 93: 521-525.

Lord C et al. (1999), Autism Diagnostic Observation Schedule (ADOS). Los

Angeles: Western Psychological Services.

Le Couteur A et al. (2003), Autism Diagnostic Interview – Revised (AD-R). Los

Angeles: Western Psychological Services.

Wing L et al. (2002), The Diagnostic Interview or Social and Communication

Disorders: background, inter-rater reliability and clinical use. J Child Psychology

& Psychiatry 43: 307-25.

Skuse D et al. (2004), The developmental, dimensional and diagnostic interview

(3di): a novel computerized assessment or autism spectrum disorders. J.

American Academy o Child & Adolescent Psychiatry 43: 548-558.

INTERVENTION

Fuentes-Biggi J. et al. (2006), Good practice guidelines or the treatment o

autistic spectrum disorders (in Spanish). Rev Neurol, 43: 425-438. In: http://www.

neurologia.com

Fuentes-Biggi J et al. (2006), Guide de bonnes pratiques dans le traitement des

Troubles du Spectre Autistique (French translation). Rev Neurol, 43: 425-438. In:

http://pagesperso-orange.r/arapi/chiersPDF/08GUIDE-TSA.pd

SIGN – Scottish Intercollegiate Guidelines Network.(2007), Assessment, diagnosis

and clinical interventions or children and young people with autism spectrum

disorders: A national clinical guideline. In: http://www.sign.ac.uk/pd/sign98.pd

UK Department o Education and Skills and Department o Health. (2002),

Autistic spectrum disorders good practice guidance. In:

http://www.teachernet.gov.uk/_doc/4493/ASD%20Good%20Practice%20%20part%201.pd



Best practices or designing and delivering eective programs or individuals

with ASD (1997), Recommendations o the collaborative Work Group onautistic spectrum disorders. Caliornia: Caliornia Departments o Education and

Developmental Services.

Clinical practice guideline: report o the recommendations. Autism / pervasive

developmental disorders: Assessment and intervention or young children

(age 0-3 years) (1999), New York, Publication No. 4215. In:http://www.health.state.ny.us/community/inants_children/early_intervention/disorders/

autism/#contents.

Report o the MADSEC Autism Task Force (2002), Manchester, Maine: Maine

Administrators o Services or Children with Disabilities (MADSEC).

Evidence-based practices or children and adolescents with ASD. Review o theliterature and practice guide (2003), Children’s Mental Health. Ontario, Canada.

Roberts JM (2004), A review o the research to identiy the most eective models

o best practice in the management o children with autism spectrum disorders.Sydney: Centre or Developmental Disability Studies. Sydney University.

Department o Ageing, Disability and Home Care.

Levant RF. Report o the 2005 Presidential Task Force on Evidence Based Practice.Washington: American Psychological Association.

THE SUPPORT PLAN SHOULD EVOLVE AS THE PERSON GOES THROUGH

THE LIFE CYCLE

International Association Autism Europe (2006), Position Paper: Education o

Persons with Autism Spectrum Disorders. Brussels, Belgium.

Schalock RL (2004), The concept o quality o lie: what we know and do notknow. Journal o Intellectual Disability Research 48: 203-216.

IMPLICATIONS FOR PRACTICE

European Union Institutions and Bodies (Parliament, Council and Commission).

Charter o Fundamental Rights o the European Union. Ofcial Journal o theEuropean Union (2007/C 303/ 01-16).

Committee o Ministers. Council o Europe. Resolution ResAP (2007)4 on theeducation and social inclusion o children and young people with autism

spectrum disorders. In: https://wcd.coe.int/ViewDoc.jsp?id=1226295&Site=CM

&BackColorInternet=9999CC&BackColorIntranet=FFBB55&BackColorLogged=F

FAC75

European Foundation or Quality Management (2008) The undamental conceptso excellence. In: http://www.eqm.org/Deault.aspx?tabid=36

International Association Autism Europe (2007), Position Paper on Care or

Persons with ASD: A rights-based, evidence-based approach. (A document

endorsed by ESCAP and IACAPAP), Brussels, Belgium.

This publication is supported by the Directorate-General or Employment,

social afairs and equal opportunities o the European Commission.

Its unding is provided or under the European Community Programme or Employment and Social Solidarity (2007-2013). This Programme was

established to nancially support the implementation o the objectives o the European Union in the employment and social aairs area, as set out

in the Social Agenda, and thereby contribute to the achievement o the Lisbon Strategy goals in these elds.

The seven-year Programme targets all stakeholders who can help shape the development o appropriate and eective employment and social

legislation and policies, across the EU-27, EFTA-EEA and EU candidate and pre-candidate countries.

PROGRESS mission is to strengthen the EU contribution in support o Member States’ commitments and eorts to create more and better jobs and

to build a more cohesive society. To that eect, PROGRESS will be instrumental in:

• providing analysis and policy advice on PROGRESS policy areas;

• monitoring and reporting on the implementation of EU legislation and policies in PROGRESS policy areas;• promoting policy transfer, learning and support among Member States on EU objectives and priorities and

• relaying the views of the stakeholders and society at large.

For more inormation see:

http://ec.europa.eu/employment_social/progress/index_en.html

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