Inclusion and Autism

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Inclusion & Autism

Inclusion and autism:is it working?

1,000 examples of inclusion in education and adultlife from The National Autistic Society’s members

J udith Ba rnardAid a n P rio r

David P ot ter

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Inclusion & Autism

Copyright © The Na tiona l Autistic S oc iety 2000

First pub lishe d in the U K by The Na tiona l Autistic S oc iety, 393 City Roa d,Londo n EC1V 1NG, registered cha rity numb er 269425. All rights reserved . Nopart of this publica tion ma y b e reproduced or transmitted in a ny form or by

any means, electronically or mechanically, including photocopying, recordingor any information storage or retrieval system worldwide, without the priorpermission in writing from the publisher.

Research by Aidan Prior Communications and data processing by Independent Data Analysis.

ISB N 1-899280-36-7

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ContentsInclusion & Autism

Introduction

Part one: Summary findings with quotes andcase studies

Inclusion ............................................................................6Experience of educ ation....................................................6Differences in S cotland and Wales....................................9Into ad ulthood..................................................................10Cos ts a nd funding............................................................12Conclusions.....................................................................12Recommendations...........................................................13

Part two: Summary results of survey

The s ample a nd respons e rates .......................................15Key findings:

P arents a nd c arers of c hildren under 20...............16P arents a nd c arers of c hildren over 20..................21Adults with autism.................................................23

Appendices

1. What are a utistic s pectrum disorders?.........................252. Inclusion in educ ation..................................................26

References 28

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Inclusion & Autism

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IntroductionInclusion & Autism

We picked inclusion as the focus for a s urvey this yea ras it seems to be a prominent principle of g overnmentpolicy at a national and local level. But people areconstantly questioning exactly what it means. Manypeople interpret it within a narrow educationalcontext where it is often used to describe theintegration of children with spec ial educa tional needsinto mainstream schools - sometimes linked with theclosure of spe cial schools. We wa nted to look at thewider picture: inclusion in soc iety - a broad conc ept ofsoc ial inclusion - as it touche s the lives of real fam ilies:

our membership.

To that end w e devised a q uestionnaire which wa ssent to 2,409 National Autistic Society (NAS)memb ers ac ross the UK. Over 1,100 were returned.The first 1,000 were a nalysed . The s urvey w asdivided into three sec tions: one for parents /ca rers ofsc hool-age d children; one for parents/ca rers of a dultchildren; one for people with autism or Aspergersynd rome. As the respons e rate to the third s ectionwas anticipated to be low (previous questionnaireshad demonstrated this to be the case) a ser ies ofsupplementary interviews with ad ults w ith a utism o rAsperger syndrome were carried out. Some adultswithin NAS services also completed theques tionnaire w ith help from their support wo rkers.

This report highlights th e key findings from our surveyand interviews and identifies a number ofrecommendations for the future. Differences inScotland and Wales compared to the overall UKresults have been identified se pa rately. This report alsofeatures key findings from the lates t research into theannua l cost of a utism a nd Asperger syndrome in theUK and the consequences of la te diagnosis andintervention (see pa ge 1 2). The NAS will wo rk withpolicy and decision-makers in central and localgovernment to ensure that these issues are add ressed.

TerminologyWe ha ve used the term 'autism o r Aspe rger synd rome'throughout this report to refer to autistic spectrumdisorders. Appendix 1 (page 25) gives a more detailedexplanation of autistic spectrum disorders. Unlessmentioned otherwise, all findings relate to bothautism a nd Asperger syndrome.

The m id-point lines on diag rams (------) indica te t hemiddle point of agreement and disagreement interms of response.

Quotes from surveysWe ha ve used quo tes from surveys to illustrate keyfindings . The reference to low, med ium or highfunctioning relates to a question asked of allrespo ndents as to the a bility of the c hild or adult withautism o r Asperger synd rome. 'High functioning' or'very high functioning' relates to the more ab le end ofthe autistic spectrum where the disability may notalways be so obvious. 'Low functioning' relates tothe less able end of the spectrum.

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Summary FindingsInclusion & Autism

InclusionAutism and Asperger syndrome are described as a'hidden' disability - they are not easily recognisedand a s such do not a t t rac t the same a t tent ion fromsociety as more obvious physical disabilities. Asaw areness of autism amongs t most of the populationis very low and the nature of the disability oftenextremely complex 'inclusion' is ha rder to ac hieve as

it requires adjustments from others if people withautism and Asperger syndrome are to be able topa rticipat e fully in s ociety.

The NAS rep ort Autism - The Invisible Children? (Peacock, Forrest and Mil ls 1996) ident i f ied thedifficulties fa ced by c hildren and their families a s aconsequence of poor planning and co-ordination bylocal authori t ies and of inadequate support forstudents with autism in the ma instream. This s urveydemonstrates tha t many s chools have improved inrecent years. Parental satisfaction is increasing, butnot for all age groups or for all types of provision yet.

'Inclusion is not about everyone being the same but about having the choice to live where they feel most co mfortable and having the op portunity to ' join in ' w ith what they want to - and not w hat someone else thinks they ought to.'

'There should be an awareness by policy makers that inclusion should be about cho ice. Residential communities can be used to help create opportunit ies in the local comm unity and should not be seen as 'excluding' people from ' the ' comm unity. Our son has far more access to the community through the act ivit ies and support provided b y his residential commu nity than ever he would if stuck in a house in a street relying totally on someone/carer being available to t ake him out.'

Parent of a low functioning adult living in atherapeutic community

The policy of inclusion must e nsure that a ppropriatelearning o r other positive experiences take p lace. It isnot simply about w here an individua l is ed uca ted orreceives services or support; it is about the quality ofsuch a service or support. Inclusive education is aproces s involving th e restructuring of the c urriculumand clas sroom orga nisation. This distinguishes itfrom integration which focuses on the placement ofan individual or group and that individual or grouphaving to ada pt to w hat the s chool is a ble to offer.

Inclusion s hould never replace sens itive, individua lplanning. This is particularly so in the c as e of acom plex but relatively s ma ll number of individua ls.

Autism is a spec trum condition req uiring a range ofindividua l and o ften highly sophisticated responses .The m ajority o f thes e w ill hopefully oc cur w ithin themainstream of provision for all or most of the time.There are, how ever those individua ls whos e interestswill be bes t served by d iscrete specialised services toprovide the most appropriate and meaningfuleduca tion a nd lifelong s upport.

Experience of educationRough ly ha l f t he re spo nden t s t o th i s pa r t o f t hesurvey were in a mainstream environment a nd ha lfin special is t provis ion a wa y from the ma instrea m.A posi t ive picture begins to emerge for ear lyyea r s p rov is ion wh ich d ec l ines th rough the l a t e rschool years .

Overall 73% of parents a nd c arers are sa tisfied w iththe ed uca tion their child is receiving (35% verysatisfied, 38% quite satisfied). Where autism specificsupport was provided - whether in autism spec ificunits attached to mainstream schools or specialschools, or autism specific schools parents’ satisfactionlevels w ere at the ir highest. Those with a child in a utismspec ific provision w ere twice as likely to be 'very satisfied'(54-70%) than those whose child w as in a ma instream

How has your view changed over the lasttwo years?

much more sa tisfied now (19%)

a little more satisfied now (19%)

no change (38%)

a little less satisfied now (9%)

much less sat isfied now (8%)

Note: 7% not sta ted

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se tting (23-41%). Only 12% of p arents with c hildrenin an unsupported mainstream primary school arevery sa tisfied. The evidence therefore demo nstratestha t sta ff training and expertise in a utism is key if theneeds of each individual child with autism orAsperger syndrome are to be met; a lso that eachchi ld should have access to appropriate levels ofsuppo rt. The type o f scho ol may b e important insome instances because the par t icular needs of achild may require a very specific setting. But the

overall finding o f this survey highlights the need forrelevant training and expertise for staff andappropriate support for the child as being ofparamount importance.

'The best! The teachers and support staff in my son' s autistic unit are highly trained professionals, truly experienced in autism and its management. As parents we are continually learning from them as our mentors - it 's wo nderful to have these professionals who can help us to understand and manage our autistic son. The classroom set-up and approach is appropriate. Staff:pupil ratio is very high. Structure is the essence of the unit. Social and independence skills development targets are included. All children are statemented and have individual education plans.'

Parent of a high functioning child, in an autism specific unitattached to a mainstream primary school

'The school has welcomed him and been open to

understand ing him and his problems. He has the example of a 'norm al' peer group. He has virtually full-time support.He has an excellent speech therapist w ho he sees weekly with one or tw o d ifferent 'norm al ' chi ldren for social skil ls etc. He also sees a specialist teacher onc e a week who wo rks in a similar way and wh o helps advise teachers and supp ort wo rkers on curriculum if nec essary. It is a team. But it took a lot of fighting fo r!'

Parent of a high functioning child in mainstream primary with support

Parents are no happier with generic special schools(without a utism spe cific provision) tha n they a re withmainstream provision with some learning support.Children with autism and Asperger syndrome haveuneven abilities and it may not be appropriate forthem to be in a setting for children with learningdisa bilities w here it is ass umed tha t ab ilities are equa lac ross a range of subjects.

'Stop babysitting and start teaching.'

Pa rent of a low functioning c hild in a special needs primary sc hool

'Teachers and staff do not seem to have much know ledge about teaching children with autism at his special playgroup. They seem to be more concerned w ith the children with physical disabilities, and m y son is left to play alone because he does not demand any attention.'

Parent of a medium functioning child in a special needs playgroup

'Strengths are no t d eveloped. Individual Education Plans have as 'a ims' things he has been able to do for a considerable time - som e of which, at least, the staff must be aware of as he has done them during school t ime.Boredom is a problem. There is no attempt to help interact - the unit is a comm unication disorders unit - the three (out of six) children w ith autism are often left out o f activities the others are included in with the mainstream c lass.'

Parent of a medium functioning child in a special needs unitattached to a mainstream primary school

Pa rents need more choice - very few sc hools havesta ff who a re ad equa tely trained and ca n provide theright level of support for children with autism andAsperger syndrome, and autism specific provision isvery limited. S ome yo ung c hildren ha ve to trave l longdistances.

'We are in dispute w ith the school about its appropriateness for our son. His teachers believe that he should be m oved to an SLD school [school for childr en with severe learning disabilities]. We believe that they base their judgem ent on his poor com municat ion and lack of language rather than on his ability to learn thro ugh ot her means (ie. visual)… We feel that there is a lack of commitment tow ards our son and a prejudice against non-verbal children.'

Parent of a quite low functioning child in an autism specificunit atta ched to s pecial needs primary school

% o f

p a r e n t s w h o s e c h i l d r e n a r e i n a

m a i n - s t r e a m e d u c a t i o n a l s e t t i n g

stronglyagree

Note: 8% answ ered‘don’t know’

agree neitheragree ordisagree

stronglydisagree

My son/da ughter has b een b etter servedby b eing in a ma instream sc hool but onlybeca use we ha ve fought hard for what wewant

disagree

10

20

30

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'The school seems to be pulling out all the stops to help my son. But there is not enough expertise on autism. County- wide no t enough sp aces in autism-specific units. Teaching aids etc. not geared to autism. M ore courses needed for teachers and LSAs - some are available but scho ol cannot afford them.'

Parent of a high functioning child in a mainstreamprimary s chool with c onsiderable support

'We wo uld like our son to be able to be educated nearer to home. Having to be p icked up in a taxi at 8 am is not fair on

a six-year-old c hild.' Parent of a medium functioning child in an autism specific unit

attached to mainstream primary school

'They don' t und erstand autism and how to reach or teach autistic childr en. They miss the point ab out soc ial skills and comm unicat ion and don' t help at al l with social ski l ls ,therefore my son hates school. They o verestimate his skills and push him too hard. His memory is poor and they don't listen to anything w e have to say about this w hich is putting him at risk. He now suffers psycho logically.'

Parent of a very high functioning child in mainstreamprimary with some support

Choice may mean greater co-operat ion andcol laborat ion between mainstream providers andspecialist autism providers. For some children aspec ial is t environment is s t i ll the b est to p romotetheir own inclusion. Equality of opportunity willmea n flexibility in rules , routines a nd c urriculum -not that all pupils get the same. A range of provision isneeded if individua l needs a re to b e met.

'M y son is being taught at a special school that is a centre of excellence for autistic children. He has the chanc e to mix with non- autist ic children, but has the advantage of being taught b y specialist teachers right through his school life.An MLD school was the r ight choice for my son.Mainstream scho ol would have been disastrous!'

Pa rent of a quite low functioning c hild in a special needs school

'I wou ld like my son to have more opportunities to mix with 'normal ' chi ldren through closer l inks with nearby mainstream schools. We have been told b y the LEA that this was an aim but it has not been imp lemented.'

Parent of a medium functioning child in aspecial needs primary school

Sa tisfac tion is higher among parents of pre-schoo l andprimary aged children which indicates that nurseriesand primary sc hools are responding quite well to theneeds of chi ldren with aut ism and Aspergersyndrome. What parents value most is therecognition of their child's individual needs and theyare happiest when schools are recognis ing andmeeting those needs.

'The scho ol has an excellent policy of treating all pupils as individuals. It prides itself as being a 'p eople place' . The school has worked with us to remove b arriers by f inding simple solutions. All direct teaching staff have been made aware of Asperger 's symptoms and useful s trategies.Ancillary support staff are aware but have less understanding. Sure problems occur but are resolved speedily. A knowledgeable proactive special needs co- ordinato r helps. It was totally the opp osite situation at his previous school.'

Parent of a child with Asperger syndrome, in a mainstream

primary sc hool with no s pecial support

Secondary schools and fur ther educat ion are lessable to meet the needs of children with autism andAsperger syndrome and parental satisfaction levelsdec rease the older their child becom es.

'He has been put in the ' lowest ' c lass because he has Asperger' s without loo king at ability. There seems to be a tendency for him to be seen as just another one in the slow group rath er than an individual with specific and different needs.'

Parent of a high functioning child in an 11-16mainstream school with some s upport

Parents’ perceptions are that LEAs are driven by cost

and resources, not by the needs of the child. P arentsstruggle to get the provision they believe is right fortheir child - 64% said that they only achievedsa tisfa ctory provision b y fighting ha rd for it.

'Each child should be educated according to their individual needs and w hat is best for them. Too often they are placed in unsuitable environments on the grounds of cost. If inclusion in mainstream school provides the best opp ortunity for an individual child then they should have the opportunity to at tend w ith whatever support they need,regardless of cost. My child would not co pe in mainstream because of her severe learning disabilities and her autism,therefore placem ent in a special school is better for her at the mo ment. This may change as she gets older.'

Parent of a quite low functioning child in aspecial needs p rimary school

'The local education authority clearly wanted the cheapest

option for my son. They were not honest about the m ost appropriate provision for him.'

Parent of a medium functioning child in an autism specific unitattached to special needs primary school

One in five ch ildren w ith autism o r Aspe rger syndromeis excluded from school at some point, quite frequentlybecause of a lack of staff with autism experience.Schools are unable to cope with a child's behaviourand will ask pa rents to remove the child a t difficulttimes. Children at the more a ble end o f the a utistic

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spec trum have more problems. Their beha viour canoften be more cha llenging a nd they a re more likely tobe excluded from school.

'Our son' s educational needs are not being met. Our son is in crisis, on occasions we are being asked to w ithdraw him from scho ol. He is being exposed to physical abuse within the school environment. He is not gaining education, social benefits from his placem ent. Our views as parents are not being prop erly listened to.'

Pa rent of a high functioning c hild in mainstream s econda ry schoolwith considerable support

Overall 84% have a Statement of Special EducationalNeed or a Rec ord of Need (Sc otland). And a lmost halfthose without are in the process of assessment .However, 31% of those at the higher end of theautistic spectrum fail to achieve a statement.

'H is statement of special needs was issued far too late.Some teachers are still unaware of how to meet his needs in lessons.'

Parent of a medium functioning child in a mainstreamsecondary school with some support

Social skills training is often neglected by schools;greater weight is placed on a ca demic achievement .This lead s to children being excluded a nd oftenbullied at sc hool. P ositive inclusion policies need toencourage fr iendship and support among peers ;scho ols should work proac tively to enco urag e so cial

integrat ion, not just ad opt mea sures such as 'ant i -bullying' policies. B as ic life skills are an importantpart of the development of any child - but even moreso for children w ith autism. Inclusion will not w ork forthes e children if it is who lly ac a dem ic in its focus . Thepreparation for an adult life - which is likely to betougher tha n for the averag e child - is very important.Undertaking 'normal' tasks later in life such asshopping, managing to live independently, or forthose higher up the spectrum, commuting to a job or

deal ing with change at work can create manycha llenges and difficulties. Pa rents are not sa tisfiedwith the level of life and social skills training theirchildren are receiving.

'He need s more tim e for his social skills and help with his fine motor skills. The school is more interested in his academic side - he has very little time sp ent on life skills.'

Parent of a high functioning child in a mainstreamprimary sc hool with some s upport

'SEN sympathetic , but very large, school and some teachers are dismissive of special needs which are only social and comprehension. Little training for teachers although th ey are sent factsheets and have had a nurse coming to school to explain his problems to them .'

Parent of a very high functioning child in mainstream secondaryschool with no spec ial support

'M y son is 13 years old and suffers from Asperger syndrom e.The large secondary school he attends are well meaning but overwhelmed w ith other problems. He suffers badly from bullying which is largely ignored b y the school in the ho pe that it will go away. When he object ed to b eing bullied it was easier to exclude him than exclude 5-6 bullies.'

Pa rent of a high functioning c hild in a ma instream seconda ryschool with some support

Differences in results inScotland and WalesResponses from NAS members in Scotland, (127)Wales, (77) and Northern Ireland (7) were loggedcarefully in analysing the results so that anysignificant differences from the overall UK findingsfrom the sa mple of 1,000 could be ana lysed.

The element of the s urvey w here a large eno ughresponse w as obtained (818) to be a ble to draw s omeconc lusions on regional differences in Sc otland a ndWales w as the sec tion for parents w ith children underthe ag e of 20. Respons es from Northern Ireland w eretoo low to be a ble to draw a ny robust conc lusions ondifferences from the overall UK results.

Respondents f rom Scot land w ere younger than theUK a verage with slightly younger children w ith autismor Asperger Syndrome tha n the UK average .

30% of children of parents in Scotland do not have aRecord of Need compared to only 13% in the UKoverall (this is pa rtly explained b y a larger number ofparents who are in the middle of the assessmentprocess now.).

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'The reason he is not included in society is because 'society' doesn't want him to be.'

Pa rent of very high functioning ad ult living in rentedaccommodation with some support

'Our son d oes not w ish to participate who lly in society. He is happiest when alone… How do you include someone who doesn't want to be included?'

Parent of an adult in residential care

'He d esperately wants to l ive in the community but is so gauche soc ially that he is laughed at, picked o n and has even been attacked at a bus stop in daytime.'

Parent of an adult living in a bedsit within a nursing home forpeople with mental health problems

Parents bel ieve that the most important areas fortheir adult children to make progress in arerelationships, soc ialising, ed uca tional opportunitiesand work. Yet half the parents said that their son ordaughter has not b een able to meet people and makefriends outside their home as much as they wouldlike, and only 11% have a cc ess to pa id employment.

'M y son is well cared for, does work he enjoys, although he is not paid and continues with his education doing the same things he did ten years ago. He does not prog ress. We have very limited help but I am not sure that now, at the age of 27, he w ill ever be able to socialise, have relationships and live independently. Perhaps if his autism had been diagnosed earl ier and his education had been more appropriate to his special needs [he would have been more prepared for an inclusive life in society].'

Parent of a low functioning adult living at home

There is a core of a bout 10% of the Sc ottishrespondents who are 'very dissatisfied' with theeduc at ion their child is receiving (this com pa res with5% of parents in the UK as a whole).

As c ompared w ith the UK as a whole, a lmost twicethe number of respondents from Sco tland and Walesreported that their child did not have an IndividualEduca tion P lan (IEP).

Parents in Scotland with children with autism andAsperger Syndrome in mainstream education are morepolarised in their views. Their overall rating ofma instrea m educ at ion is a little low er than for the UKas a whole. There app ears to be a cons istent number(albeit a minority) who are not ha ppy w ith the provisionthe ir ch ild is rec eiving. A further minority expres sgreater satisfaction than for the UK as a w hole.

Respo ndents in Wales a re a little less happ y (than theUK as a whole) in the wa y that ed ucat ional opt ionsare desc ribed to them.

In S cot land ed ucat ional psychologis ts are far morelikely to be describing educational options to parentsthan in the UK as a w hole, (55% as oppos ed to 35%).Child psychologists are a lso more involved in advicein Sc otland tha n in the UK as a whole.

Twice a s ma ny respondents in Scot land compa redwith the UK as a whole still don't feel that they know wha t sort of educ ation their child s hould be receiving,although this may be simply because their childrenare on average, younger.

Into adulthoodFor adults a bleaker picture emerges. Inclusionbecomes harder to achieve once the institutionalworld o f educa tion ha s b een left behind. Most a dultswith autism or Asperger syndrome we s poke to ha veaspirat ions to be in a paid job but few actual lymanage to achieve that goal a t present . Livingindependently, socialising, making friends andforming relationships are a ll cha llenges .

Parents described inclusion as being ' accepted byother people', 'part of society', 'taking part incom munity life', 'a ble to lead an indep endent life', 'a bleto lead as normal a life as possible', 'included in thewo rkplace', 'included in soc ial/recrea tional a ctivities'and 'offered the same opportunities as others'.

Only 41% of pa rents feel that their son or da ughter isincluded in society.

P e r c e n t a g e o f p a r e n t s w

i t h

s o n s / d a u g h t e r s o v e r t h e a g e o f 2 0

no

47%

ye s


Do yo u feel that yo ur son/da ughte r isincluded in society?

41%

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10% of adul ts have no a cces s to s ervices o r otherac tivities a t all - they do not atte nd da y services , haveno employment opportunities, either paid orvoluntary, no training, further education or leisureopp ortunities either.

'Even a few hours of wo rk, either paid or unpaid. He doesn't mind not earning the money but needs more structure to his day and more p urpose in his life to be fulfilled. He has a qualification in advanced comp uter studies but at present is

unable to get a job. He needs someone w ith him such as a job co ach for sup po rt. '

Pa rent of very high functioning adult living in rentedaccommodation with some support

Looking to the future 55% of parents think thatopportunities for inclusion will be better, but only21% think that their son or daughter will be living amore fulfilled life ten y ea rs from now .

' [ Inclusion means] that my son, though suppo rted, should be able to mix with other m embers of society on equal terms and have equal access to leisure and other facilities.That he should not b e treated as a second class citizen, but that his special needs should be acknow ledged.'

'Thanks to t he skill and imagination o f the staff in the

service where he lives, new ways of helping him b lossom are constantly being devised. He is less bored, more comm unicative, more creative than he was ten years ago. I can only see, all things being equal, this process continuing.'

Parent of a medium functioning adult livingin an a utism s pecific g roup home

While the education system is now meeting theneeds of younger children with autism a nd Aspergersyndrome far better, many of tod ay's ad ults were notdiagnosed when they were young a nd therefore didnot benefit from early intervention. Some parentsbelieve that it is too lat e for them to b enefit now. Weasked w hat w ould ha ve prepared them bet ter for an'inclusive' life in so ciety?

'Being d iagnosed at an early age and receiving approp riate educatio n as well as care for her needs. It's to o late now.'

Pa rent of a low functioning adult in a day servicefor adults with spec ial needs

'Early diagnosis. A proper autistic primary school environment wh ere she would be understoo d as she is now.'

Parent of an adult in residential care

Adults with autism or Asperger syndrome haveexpressed their ow n views ab out inclusion. Theirpriorities are clear: the desire for a job, being able tomake friends, and for some, having a relationship.Some have a cces s to s ocial skills g roups w here theycan learn to socialise with other people. But not allwa nt to so cialise w ith people with autism or Aspergersyndrome. Yet opportunities to make friends withother people are very limited.

'There are a few things I would like to follow through within the next ten years. First of all, and mo st impor tantly, my work. Seco ndly, friendship: I wo uld like to obtain a variety of different friend s… I think later on I would like a relationship.That relationship w ill only be a meaningful relationship with the right person… that is the third, I guess least impo rtant,thing of the three.'

A young woman with Asperger syndrome

' I imagine that ' inclusion' means - to the extent that you want to be included - [dealing with] the things in society that are barriers to inclusion which m ight be: not being able to get a job, or other peop le's reactions to you, or finding it difficult to form friendships, as well as your ow n individual skills and your way of living in the w orld and trying t o make yourself 'acceptable ' to ' normal ' peop le. So socially you don' t say things that upset people. A cod e for social ising with peop le even if i t is not your cod e for social ising with people.'

A young man with Asperger syndrome

'The friendship s I generally have are through a youth club called LINKS which has a mixture of people with learning disabilities and other disabilities… they go o n all sorts of outings which is good . I am not aware of any other groups which have ordinary people with Asperger's that can go on all these trips with me.'

' I wo uld much rather have the pract ice in learning to socialise with ordinary people and peop le with Asperger

A more understanding a nd respectfulpublic/better public aw arenes s

Improved so cial s kills/bette r and morestimulating social activities andopportunities

Suitable employment

More friends hips a nd/or relationships

Percentage(of those respondents whoanswered this question)

34

20

10

8

What would be the one change now,(either in soc iety or in your so n/da ug hter),that would make most difference to yourso n’s/da ughte r’s inclusion in soc iety?

11




syndrome because I would l ike to b e respected in society and accepted in society and not be branded an o utcast or thought of as an outcast by the ordinary person.'

' I need to change my habits in order to f i t in w ith society,because the truth is ob viously that society isn ' t going to conform to your ways: you have to conform to society in order to g et on in life.'

A young woman with Asperger syndrome

Costs and funding:investing for the futureThe G overnment need s to c onsider the longer termcos ts of meeting the needs of people with autism orAsperger synd rome. What this report dem onstra tesis the need for educators and carers to havead eq uate training a nd expertise to help people withautism a nd Asperger syndrome meet their potential.The pa rents o f ad ults w ith aut ism a nd Aspergersyndrome w ho w ere diagnos ed la ter in l ife bel ievethat ear l ier diagnos is and then intervent ion w ouldhave ma de a difference to their children's prospectsin life: more chance of living independently, morecha nce of educa tion and training.

A recent report summary published by the MentalHealth Foundation The Cost of Autistic Spectrum Disorder (Kna pp a nd J a rbrink 2000) identifies theannua l total cost o f autistic d isorder in the UK to beat leas t £1 billion.

The grea tes t co sts a re for living supp ort (70%) a ndda y a ctivities (14%). Much less is s pent on educ ation(7%). Evidence suggests that even moderateincrea ses in educa tional provision co uld po tentiallyresult in ma jor sa vings in later living co sts . Theeconomic conseq uences to pa rents of having a childwith autism living a t home include an a nnual loss ofearnings est imated as a t least one-sixth of theaverage d isposa ble income.

Supported employment schemes such a s the NAS

Prospects scheme provide an extremely cost-effective wa y of helping adults a t the more able endof the spectrum. With a small amount of supportmany are a ble to find sta ble and fulfilling employment- with the added benefit of contributing to the publicpurse and leading less dependent lives.

ConclusionsIf inclusion is not just an empty slogan it will requirean effort. People with autism and Asperger syndromehave s trengths a nd ca n make useful contributions tosociety. However, they also have special needs thatrequire adjustments from those around them. Suchindividua ls may function in the ma instrea m but o nlywith careful attention to their needs. Some may beeasi ly dis t racted, have poor concentrat ion, beanxious or confused, suffer 'overload' of information

or sens ory stimulation or be unab le to interpret subtleac ad emic or social rules. It is here tha t environmentalmodification and training of professionals are aness ential prerequisite for succes s.

Sc hools need to b uy in wholesale to inclusion if it isto work. Inclusion cannot rely on the interest,commitment and enthusiasm of one or twoindividuals. Without a shift in the whole organisation'sattitude a nd a pproach it will fail children with a utismand Asperger syndrome - as witnessed by manyschools' inability to cope when key staff areunavailable and the resultant exclusion of somechildren. There are a lso more d ifficulties at sec onda ryschool because of the greater peer pressure toconform. A study by Whitaker (1994) show ed that athird of secondary aged pupils were concerned aboutridicule or rejection by peers if they maintainedconta ct w ith pupils w ith disa bilities.

The Nationa l Curriculum does n ot ad eq uat ely reflectthe broad er educa tiona l needs of children with autismand Asperger syndrome and often fails them a nd, inparticular, the older children. If it is to work then itneeds to be adapted imaginatively to meet the differinglearning needs of these children. Evidence from anumber of aca demics (Seb ba and Sa chdev 1997, Flac k1996, Myles a nd S impson 1998) shows that this ca nprovide a more stimulating curriculum for a ll children.

12




Equal emphasis needs to be given to social skills andlife skills, espec ially for those who sta nd to benefitmost from this input.

But there is a funda mental quest ion: to what end isinclusion being promoted in educ ation? Our evidenc eshow s tha t pos t-19 there is very little for many a dultsto look forward to. Are we in danger of setting ourchildren up for failure in adulthood? If we want tomatch the aspirat ions of an effect ive educat ion

following early intervention then far more must bedone throughout society to change at t i tudes andraise aw areness.

Whatever the provision or situation for a child or adultwith autism or Asperger syndrome it is essential thattheir individual needs are met. It is vital that all peoplewho come into contact with these children and adultsshould a cknowledge their autism a nd recognise wha timpact it has on their lives a nd the ir ab ility to learnand to live w ithin our so ciety if they a re to b e fullyincluded . Training a nd expe rtise for educa tors a ndhea lth professionals is ess ential.

Inclusion should never replace sensitive individualplanning, particularly in the case of a relatively smallnumber of complex individuals who, without veryskilled support, are a source of severe disruption to

their families, schools or other placements or whosimply go on to lead unhappy, unfulfilled andvulnerable lives. This group will include the mostseverely disabled but will also apply to those of goodacademic potential but with severe social impairments.

The pos itive lea d es tab lished by pre-schoo l andprimary educa tors shows that it is pos sible to ob taininclusive environments. As children grow older sotheir environments become more complex.Nevertheless, the adjustments needed to make lifemore manageable for people with aut ism andAsperger syndrome and to enable their inclusion arenot one rous. There are simple steps to take, forexample, being clear in the use of language,providing s tructure a nd a voiding uncertainty. To workfully there will need to be an awareness of theseneeds a mong a ll those in contac t with a person with

autism o r Asperger syndrome.

Educators can promote such a sympathet icenvironment b y positive policies suc h as 'budd y' ormentoring schemes, 'circle of friends' or peertutoring. Employers can also tap into the strengths ofpeople with autism and Asperger syndrome via theuse of support workers , such as those provided bythe NAS s upported employment service, P rospects,and by ensuring that s taff are made aware of thespec ific needs of their fellow w orkers.

There is more tha t Go vernment ca n do to promoteinclusion, pa rticularly for ad ults. There is s till a hug eburden on ageing parents. Although their childrenmight have had assessments of needs, their ownneeds as carers are often overlooked. Adultsthemselves need much greate r support in obta iningwork, for example, support in preparing jobapplications and at interviews. Employment staffneed just as much understanding of the needs of thisgroup as d o educ ato rs. If it fails here any goo d w ork

that has gone before will be reduced in value. Adultsneed more support and guidance in findingopportunities to make friends (some of themstructured) if they are to a chieve their sta ted g oa ls: toincrease their circle of friendships, and in somecases, to form relationships.

Recommendations1. That a ut ism a wa reness s hould be a ma ndatorypart of Continuing Professional Development for arange of professionals in health, social services,education and employment.

2. That earlier diag nosis, identifica tion a ndintervention should be promoted to give all peoplewith autism a b etter chanc e in life. This shouldinclude:

In educa tion: initial teac her training, of S ENCOsand practising teachers in the identification of

autistic s pectrum d isorders, pa rticularly Aspergersyndrome, a t reception and in key sta ge 1. Thiswould be fa cilitated b y a refinement of ba selineassessment to monitor social andcommunication skills.

In health: the development of a nationaldiagnost ic consensus, to disseminate bestprac t ice , a nd to encourage the use of universa ldiagnostic labels.

13




3. Local education authorities should develop andmake a vailab le a utism s pecific expertise for mainstreamschools whilst maintaining choice of autism-specificscho ols. This co uld ta ke the form of a utism-spec ialistconsul tant teachers as par t of a local educat ionauthority's central teaching support services.

4. Tha t pos itive policies in sc hoo ls sho uld bepromoteed to encourage the social integration ofchildren with a utism and Asperger syndrome; there

are a host of practical initiatives which have beensuccessful and which require wider dissemination.These include: how to build on strengths a nd s elfesteem; classroom organisation; pictorial or visualtimetables; w ork organisa tion; structuring of tea chingand leisure; friendship support networks; preventionof teas ing and b ullying; planned trans itions; s tudentand sta ff prepa ration; pha sed positive implementationof new experiences a nd so o n.

5. Address the educat ional needs of those at themore ab le end o f the autistic spectrum and improvetheir acc ess to sta tementing.

6. P rovide s ocia l an d life skills training a nd so cial timesupport e.g. breaks and lunchtimes, for children withautism in schools to stand them in good stead whenthey leave educational provision. Also give greater

emphasis to disability discrimination in personal healthand soc ial educ ation a nd c itizenship curricula for a llchildren in order to address issues such as bullying.

7. Sta ff in seconda ry and further educat ionalprovision to b e trained to respo nd m ore appropriate lyto the educa t ional needs of s tudents with aut ism orAsperger syndrome. For example, by reducing thenumber of changes the student will experience andensuring that communication and organisation issuesare responded to consistently and are relevant to thestudent's level of comprehension and functioning.

8. Esta blish a pos itive incen tive for sc hoo ls to includechildren with special needs by building into localeduc a tion autho rity, and /or OFSTED performanc eindicator frameworks, the index of inclusion developedby C S IE/University of Ma nch es ter (1997).

9 . Central Government should advoca te thebusiness case for employing and serving people withaut ism and Asperger syndrome, and encourageemployers to ma ke 'reas onab le ad justments' so tha tthis group can work if they want to. Employmentservices for people with autism and Aspergersyndrome, such as the National Autistic Society'sProspects scheme, s hould be es tablished in a ll majorcities to matc h employers with potential employees .

10. Transition planning ha s rightly bee n a fforded ahigh priority w ithin ch ildren's services plans . Theimportance of this process should b e restated a s notal l authorit ies respond adeq uately and thosestudents who do not have a s ta tement of specialeducational needs may be overlooked completely.Transition planning is a dyna mic process which mustbegin early to ensure adeq uate preparat ion andapp ropriate provision for s choo l leavers.

11. Further and higher education institutions shouldbe encouraged to recognise the social needs ofstudents with autism and Asperger syndrome whomay form pa rt of their student populations.

12. Ca re sta nda rds should be s pecific in supportingthe needs of people with autism and Aspergersyndrome.

13. Work with employers to a chieve a b etterunderstanding of the needs of people at the more ab leend of the autistic spectrum and push for more'reasonable adjustments' to be made in theworkplac e so tha t people with autism and Aspergersyndrome can be employed.

14. That s ocial services , health and ed uca tionagencies should take into account the lifelong

learning needs of adults when designing their carepac kages s o that ed ucat ion and t ra ining cont inuesbeyond school and student age.

15. That further and higher educa tion funding b odiesrecognise that people with autism or Aspergersyndrome often achieve educational milestones at adifferent pace from their peers and have lifelongeducational and training needs, so that fundingshould not be time limited.

16. Above all, it should be recognised that meetingindividual needs should be fundamental whenproviding a ny service, s upport or educa tion to peoplewith a utism or Asperger s yndrome. Their rights a sindividua ls must be recog nised.

The National Autistic Society pledges to work withcentral and local government and its agencies toachieve these aims to benefit all people withautism and Asperger syndrome.

14



Summary ResultsInclusion & Autism

Response1,110 (46%) of the 2049 surveys mailed were

completed and returned to the NAS. The first1000 surveys received were analysed.

818 of the 1000 replies were from parents w ith sonsor daughters under the age of 20.

94% of respondents answered a quest ion on how high or low functioning their children are on theautistic spectrum.

19 adults with autism or Asperger syndrome replied,some sons or daug hters filling o ut this s ection of thesurvey after their parents had answered an earlier

sec tion. (In ad dition, a further 20 surveys we recompleted by adults with autism with some supportfrom their keyworkers or employment advisers).

34 adul ts with aut ism a nswered the q uest ion 'how high functioning or low functioning would you sayyou a re on the a utistic sp ectrum a s follows. (Theinterviewees from Prospects were not asked thisquestion in their one-to-one interviews.)

MethodologyResponses were needed from a large number ofmemb ers for us to be co nfident in the findings . Thiswa s es pecially important if certain premises were tobe tes ted w hich required a nalysis of sub-sets of thewhole sample. (For example, are parents of highfunctioning children with autism or Aspergersynd rome hap pier with the ed uca tion their children

are receiving in mainstrea m scho ols than pa rents ofchildren lower down the spectrum?) IDA, the data-processing company used, included 95% confidenceindica tors in their results ta bles w hich mad e light o fthe ta sk of co nsidering w hether any va riations in thefindings betw een sub-sets were significa nt or not.

Current academic thinking on inclusion wascons idered b efore the survey wa s dra fted. The firsttwo s ect ions of the survey were then tes ted w ith asma ll but representa tive g roup of pa rents. Theirfeedba ck wa s invaluable in fine-tuning the structureof the survey and in re-wording ques tions that w erecons idered unclear.

The structure and w ording of the ques tions for adultswith autism or Asperger syndrome were discussedand revised a fter disc uss ion with P rospec ts. The fiveone-to-one discussions a nd one group discussionwere also conducted with adul ts with aut ism orAsperger syndrome who are current clients ofProspects.

It was anticipated that only a handful of 'highfunctioning' a dults with a utism or Asperger synd rome(who were also NAS members), would be able toan sw er the survey without suppo rt. Therefore, in orderto broaden the sa mple, responses were also soughtfrom a dults who w eren't membe rs of the NAS (some

N u m b e r

100

200

300

400

500

2-5(pre-school)

16-19(post

secondary)

5-11(primary)

11-16(secondary)

20+(adult)

The Sample andResponse Rates

11% replied 'very high' func tioning28% 'high' functioning33% 'medium' functioning18% 'quite low' functioning10% 'low’ functioning

4 (12%) replied 've ry high' functioning9 (26%) 'high' functioning14 (41%) 'medium' functioning3 (9%) 'quite low ' func tioning4 (12%) 'low functioning'

Age and level on a utistic s pectrum

very h igh/highmediumlow/quite low

15




of whom were known to b e less high up the autisticspectrum). Most o f these respondents were in day o remployment support services and most neededsome s upport a nd a ssistance to complete the survey.Some quest ions needed to b e reworded by s upportworkers so that they could be more easilyunderstood.

It should be remembered that, even with support,many a dults at the lower end of the spec trum wouldnot be ab le to answ er the survey and therefore thesa mple is s till only indica tive of adults a t the med iumand higher end of the a utistic spec trum.

Key Findings

Parents and carers of sons/daughters under 20 (818respondents)J ust over half of these c hildren are taug ht in ama instream s etting. The remainder are in some formof spec ialist provision a wa y from the ma instream.

Overall, 84% of children have a sta tement of S pecialEducational Need (SEN) or Record of Need inScot land.

Overall, 73% of parents are 'very sa tisfied' or 'quitesatisfied' with the education and support theirchildren are receiving.

The reaso ns for their satisfac tion most co mmonlymentioned a re in order:

G ood s uppo rt/helpExcellent/trained s ta ffCa ring/understand ing sta ffChild ma king go od progressGood communica tion

Child is ha ppyG ood tea che r/pupil ratioMeets child's needsGo od knowledge/experienceChild benefits s ocially

Only 57% of pa rents who judge their children to b every high functioning are very or quite sa tisfied a nd29%, (twice the average response), are quitedissa tisfied o r very dissa tisfied.

How satisfied are you with the educationand support your son/da ughter iscurrently receiving?

very sa tisfied (35%)


quite s atisfied (38%)

neither satisfied nordissatisfied (9%)

dissa tisfied (10%)

very diss atisfied (5%)

How easy or difficult was the transition(from their previous educationalesta blishment) for your son or da ughter?(Was this a surprise for you?)

% o f

w h o l e s a m p l e

10

20

30

very ea s y d ifficultea s y neithereasy ordifficult

verydifficult

Was this a surprisefor you?

No

Yes


16




very well (40%)


qu ite w ell (36%)

neither well norpoo rly (8%)

quite poorly (9%)

very poorly (2%)

How well does their present educationalesta blishment inform you o n the prog ressthat yo ur son/da ughter has bee n making

Does your son/da ughter have an individua led uca tion plan (IEP) ?

% o f a l l r e s p

o n d e n t s

No Yes

20

40

60

80

Don’t know


Open question: If one single change wa s to be ma de to teac hing a nd support of yourso n/da ughte r to improve their lea rning or experience w hat w ould it be? '

Comment

More knowledge a bout a utism/more training/expertise

Espec ially respond ents with sons /da ughtersof 2-5 years old and those with higherfunctioning c hildren

17% of respondents with ‘low-functioning’sons /da ughters, 15% of 2-5 year olds

12% of 2-5 year olds

Even weighting

More one-to-one support

More sp eech therapy

Address s ocial needs

More integration

More understanding/acc eptance

Better communications

Number

124 15

10

7

6

5

4

4

85

57

50

41

34

33

27

Percentage(of all respondents)

Notes

17% of respondents who consider theirsons /daug hters ‘very high functioning’ a nd 10%of those who consider them ‘high functioning’

Special autistic units 3

17% of respondents with sons/daug hters whothey consider ‘high functioning’, 8% of 11-16year olds

17




P arents of c hildren who a re in autism sp ecific s choo lsa t prima ry level (89%) a nd a t a utism spec ific scho olsat sec onda ry level (94%), sc ore higher on s atisfac tionas do parents whose children are in autism unitswithin ma instream s chools.

Interestingly, spec ial needs scho ols and special needsunits within mainstream schools score no higher thanmainstream schoo ls where support is provided.

The ma jority of the 15% of parents w ho sa y they a rediss atisfied mention a 'la ck of knowledg e/com mitmentof teaching staff ' or poor teaching. Many othersmention 'insufficient help or support' or that their'child's needs are not being a ddressed '.

38% of parents a re 'much more satisfied now' o r 'alittle more sa tisfied now ' than they were 2 years a go,more than twice as many a s the 17% who a re 'a littleless' or 'much less satisfied now'.

For 23% of parents, their child's last educationalestablishment was just a temporary solution, (ahigher percentage for younger children).

30% of parents say their child's transition to theircurrent school was difficult or very difficult with thepercentag e finding it difficult increas ing with a ge.

However, one-third of parents are surprised by theea se w ith which their child hand les the transition.

76% of parents sa y they a re 'quite well' or 'very well'informed of their child's progress (autism units inmainstream schools and aut ism specif ic schoolssc ore highe r still).

79% of parents s ay their children have an individua leducation plan (IEP) and only 10% of them said theydidn' t find this helpful. (IEP figures a re significa ntlylower, 64%, in mainstrea m sec onda ry schools.)

15% of parents, and particularly those with young orhigh-functioning children, call for more knowledgeab out a utism reflected in better training a nd e xpertise.

10% of parents w ould like more one-to-one s upport,(particularly those parents with children who theycons ider 'low functioning' a nd yo unger children.)

7% overall but 12% of parents of 2-5 yea r olds ca llfor more spee ch therapy.

6% overall but 17% of respondents who considertheir children high-functioning ask for their socialneeds to be a ddressed better.

% o f



stronglyagree

10

disagreea g ree neitheragree ordisagree

stronglydisagree

20

30

Adequate resourcing and staffing are inplace to provide the care needed for myso n/da ughter

Detailed responses on mainstream experience

Only 16% disag ree with the sta tement tha t their childhas been bet ter served by being in a mainstreamschool than they would have b een at a special schoolor autism specific school, but almost a half think thisis only because they have fought hard for theprovision they wa nt.

76% consider their children to be hap py.

59% agree or a gree strongly tha t their children a remaking good aca demic progress.

64% ag ree or ag ree s t rongly that they ha ve mad egoo d improvements to the ir soc ial skills.

68% think Learning Suppo rt Ass istants are do ing avery goo d job.

More negatively:

31% of respondents, (rising to 40% for those withsecondary aged children), don't think that adequateresourcing and staffing are in place to provide theca re needed for their child.

31% of parents don't think that the teachers havereceived the professional training they need to a da ptto the special requirements of pupils with specialneeds, a gain worse a t second ary level.

18




My son/da ughter has b een b etter servedby b eing in a ma instream sc hool but onlybeca use we have fought hard for what w ewant

% o f

p a r e n t s w h o s e c h i l d r e n a r e i n a m a i n

s t r e a m

e d u c a t i o n a l s e t t i n g

stronglyagree

disagreea g ree neitheragree ordisagree

stronglydisagree

10

20

30

Unable to c ope w ith child

No support/supp ort teacheraway/short staffed

Child wa s d isruptive/noisy

Unacceptable behaviour

Violent be haviour

Child no c oping/not s ettling

Aggression tow ards otherchildren

Inappropriate behaviour

Staff were not adequatelytrained

Aggression towards teacher

PercentageNumberComment

41

36

27

19

19

17

17

16

15

12

5

4

3

2

2

2

2

2

2

1

W h a t w e r e t h e r e a s o n s g i v e n f o rexc lus ion?

% o f



stronglyagree

10

disagreea gree neitheragree ordisagree

stronglydisagree

Note: 17% responded ‘don’t know’

Note: 17% responded ‘don’t know’

30

20

My son/da ughter has b een b etter servedby being in a mainstream school than ata special school.

Exclusion and SEN tribunals

21% of respondents said their child had beenexcluded a t som e time (17% of these m ore than sixtimes), the most common reason given being that theschool was unable to cope with the child (usuallybecause specialist staff were absent or not available).

Although they understand the reasons given, 54% ofrespondents d id not agree with those reasons.

8% of respondents ha d taken a c oncern to an SENtribunal and most either won the case or the LEAgave ground before the tribunal. 50% found theprocess unsatisfactory.

Exclusion was a greater problem for higherfunctioning c hildren - 29% of 'very high func tioning'children had b een excluded from schoo l.

19




very satisfactory (13%)

quite satisfactory (23%)

neither satisfac tory norsatisfactory (8%)

not really satisfactory (18%)

not at all satisfactory (32%)

How s atisfac tory did yo u find the S ENtribunal p roce ss ?

Choosing a school and obtaining a place

24% of parents did not think they understood theeduca tional options before choos ing a plac e for theirchild. 21% found the information they w ere ab le toobtain inadeq uate, and 40% found choos ing a schoolhard.

16% of respondents did not manage to obtain a placefor their child at their first choice school and few parents received a ny ad vice o n where to go for help orsupport once their child ha d be en refused a place.

64% of respo ndents tho ught that a rguing their cas emade a significant difference to the services thatwere provided .

Worryingly, 9% of parents still feel they d o no t know wha t sort of educ ation their child sho uld be getting,(this figure is 19% in Sc otlan d).

The mos t com mon s ource of supp ort for explainingoptions was an educational psychologist (35%)followed by a 'teacher from a previous school' (19%)and LEA spec ial needs co-ordinators (17%).

Open question: What would most haveimproved the whole process of educationalselection a nd ob taining a plac e?

Comment

More acc urate information/clearerinformation/list of sc hools/informationon what wa s a vailable

More scho ols in my a rea/morechoice of s choo ls/more optionsLEA to consider needs rather thanfinance/more s upportive LEA

More supp ort/(independe nt)ad vice/guidanc e

Earlier diagnosis

More informed/trained profess ionals

Less ne ed to fight/ba ttle

Earlier provision of statement

Less delays/whole process s peeded up

Professionals who listen

More opennes s/hones ty

Less stress

More understanding

More inclusion of parents in decision

Better communication betweenprofessionals

More time

More provision for sending out ofBoroughNot a blanket po licy on inclusion/lesspressure to move to a main streamschool

Number

137

84

29

18

67

52

49

49

39

34

25

24

22

21

20

19

19

16

16

14

11

10

10

8

7

5

5

5

4

4

4

4

3

3

3

14

Percentage

20




Open question: What is yourunderstanding of the term inclusion?

Comment

Support as needed

To ta ke part in c ommunitylife/take pa rt in as ma nyactivities as poss ibleTo be acc epted b y other people[see note one]

To be p art of s ociety[see note tw o]

To be a ble to lead as ‘independent’and ‘normal’ a life as possible

Being encouraged to reach fullpote ntial/given oppo rtunity touse skills

Included in the work place

Understanding special needs

Offered same opportunities

Treated as equa l

Going into a mainstream school

To have a cces s to ed ucation

Treated with respec t

Integrated

Number

42

30

24

17

28

21

21

20

13

12

12

10

10

8

8

8

6

12

12

11

7

7

7

6

6

5

5

5

3

16

Percentage(of all respondents)

To b e includ ed insoc ial/recreational ac tivities

Notes:1- A much higher percentag e of respo ndents w ith sons /da ughterswho they consider to be ‘quite low’ (29%) or ‘low’ functioning(40%)2- As op posed to ‘apa rt’ from so ciety

Respond ents w ere asked to rank a seriesof options as the 'most' and 'least'important for their so n/da ughter to makeprogress in, to fee l 'included' in so ciety.

Relationships

SocialisingEducational opportunities

Work

Living independently in the community

Support

Dealing with money

Percentage(of those who answered whothink it ‘most important’)

40

2515

10

4

4

1

A more understanding a nd respectfulpublic/better public awa reness

Improved soc ial skills/better a nd mo restimulating social activities andopportunites

Suitable employment

More friends hips a nd/or relationships

Percentage(of those respondents whoanswered this question)

34

20

10

8

Open q uestion: What w ould ha veprepa red your so n/da ughter better for a n'inclusive' life in so ciety?

What wo uld b e the one change now thatwo uld ma ke the most difference to yo urso n’s/da ughte r’s inclusion in soc iety?

Parents/carers of sons/daughters over 20(177 respondents)Overall, a far less enc ouraging picture emerges . Only 41%of pa rents feel their so n/da ughte r is involved in society.

55% of respo ndents think that the oppo rtunities forinclusion are better than they were a few years ago.

But , only 21% think that t heir so n/da ught er will beliving a more fulfilled life in 10 ye a rs time.

Common reasons for pessimism are the lack ofunderstand ing tha t leads to their son o r daughter ' sabilities not being developed and a perception of alack of appropria te services and ca re. Those w ho a reoptimistic see their son or daughter progressing,developing and fulfilling their potential.

Most parents think their son or daughter is happywhere they live.

Most think that the ir support wo rkers do a goo d job.

Pa rents a re pes simistic ab out their son or da ughter'sprogress in being a ble to live independ ently.

One-third of respondents said 'earlier diagnosis' .Other common a nswers:

Better a nd mo re appropriate educa tional opportunitiesMore understanding staffSp ecialist autistic provisionMore emphas is on s ocial skills

21




Living and working

14% of respondents ’ sons /da ughters a re in paidwork.

46% of respo ndents ’ sons /da ughters atte nd eitherautism specific or special needs day care services.

24% are in further/co ntinuing e duc a tion.

10% of respondents' s ons/daughters ha ve no a ccessto se rvices of any kind.

Assessment of needs and obtaining appropriateservices as a result

64% of respond ents found obta ining an a sses smentof the need s of their son/da ughter 'quite hard' or'very hard'.

Only half of the respondents have a copy of theirson's /da ughter's care plan.

21% of respond ents s aid tha t the s ervices identifiedas being appropriate in the asses sment had not beenma de a vailab le to their son/da ughter.

Quality of residential care

Parents are generally happy with the quality of careand the encouragement provided in the developmentof independent living skills.

However, 16% of respondents don't think that thehealth and s ocial services s taff ada pt their prac ticesad equa tely to ta ke acc ount of their son's/da ughter'sautism or Asperger Synd rome.

A half of pa rents don't think that their son/da ughterhas been able to meet people and make fr iendsoutside their home a s much as they wo uld like.

Care from parents (and support in their roleas carers)

14% of parents c are for their son/da ughter more orless full-time.

7% of pa rents ca re for their so n/da ughte r pa rt-time.

A quarter ca re for their son/da ughter only on tho seoccasions when they return from a structured caresetting, (weekends or holida ys).

16% of parents spend no time caring for theirsons /da ughters, (either beca use the y liveindepe ndently or beca use they need full-time supportfrom expe rts).

About half of regular carers have not had anass essment of their own needs a s a ca rer.

A half of regular carers feel that they have not hadad eq uate support in ca ring for their son/da ughter.

12% of regular carers have received training inbehavioural mana gement.

In a residential setting

At home with me

In a group home

At home with other fa mily membe rs

In a therapeutic community

In rented accommodation withsome supportIn their own home with some support

Independently in rentedaccommodat ionIn a National Autistic Societyresidential homeIn a further education or residentialcollege

In a nursing home

Independently in their own home

In a hostel

In a hospital

Number

59

39

33

22

24

10

10

8

5

6

3

3

4

2

2

1

6

6

5

3

3

2

2

2

1

1

-

19

Percentage(of all

respondents)

Note: 50% of sons/daughters of respondents w ho sa y they are‘q uite low’ functioning live in a res idential setting

My so n/da ughte r lives :

22




Adults with autism(19 respondents plus 20 replies from adults who hadsupport in answering the survey. In addition, eightone-to-one interviews were conducted.)

29 respo nses were from men with autism or AspergerSyndrome and 10 from women.

Almost a third of those responding, were notdiagnos ed until over 20 years of a ge.

Home and independent living

69% of respondents say they are happy with wherethey live.

71% think they have m ad e progress in being a ble tolive independently.

28% find it difficult to s hop for w hat they need .

Where do you live?

At home with my parents (see Note 1)

In a group home(14% of total sample)

In a residential setting

Independently in my own home

Independently in rented acc ommodation

In my own home sharing with friends

At home with other family members

In my own home with some s upport

Independently in a council home

In rented ac commodation with some s upport

Note 1: 50% of those a nsw ering. Howeve r, over-represented a s all 9of one set of ‘supported’ respondents live at home with their parents.

Total

21

7

4

3

2

1

1

1

1

1

Hours

None

1-6

7-15

16-25

26-100

101-150 (full time)

Weekends

Every other weekend

One weekend a month

Holidays

28

15

12

2

6

19

7

5

15

20

Note:12% of regular carers have received training in behavioralmanagementAbout one-half of regular ca rers ha ve not had a n as sess ment oftheir own needs a s ca rersAbout half of regular ca rers feel that they have not had a dequa tesupp ort in caring for their son/da ughter

How many hours a week do you c are foryo ur so n/da ug hter, (if at a ll)?

Number Percentage

28 (16%)

15 (8%)

12 (7%)

2 (2%)

6 (3%)

19 (11%)

7 (4%)

5 (3%)

15 (8%)

20 (11%)

Are you in paidemployment? (full orpart time)

Yes No

If you are not in paidwork, would you like tobe ?

Have you had access toemployment a dvice?

Do you have anemployment supportworker?

Percentage(of total sample

responding yes or no)

Percentage(of total sample not

answering)

820

59 13

3346

31 56

72

28

21

13

Note: People with autism and Asperger syndrome findquestionnaires difficult to complete. As a result, the number notansw ering q uestions is quite high. The percentage not ans wering

has been indicated next to each question.

Questions about employment

Work 20% are in pa id w ork, (either full or pa rt-time), 30%are in voluntary or unpaid wo rk.

The ma jority wh o a re not in paid w ork would like tobe and abou t ha l f t he sample have had a ccess toemploymen t ad vice. The bigg est b arriers to wo rking ina job are: concerns ab out the social aspect of wo rking,

23




followed by lack of a support worker, negativeperceptions of employers and worry about benefits.

Help and support

Three qua rters of respo ndents think they know how

to g et help if they need it and three q uarters think thehelp they receive is goo d.

However, almost a third of the respondents don'tknow how to co mplain if things g o wrong.

1

2

3

4

5

7

6

Don’t think I could cope with the soc ial side of working

Not sure what I could do

Lack of support worker

Negative perceptions of employers

Worry abo ut be nefits

Don’t know where to go for ad vice

Bad experience in previous jobs

(Respondents were as ked to rank these fa ctors in order of theirimportance. Here they are ranked in order of the overall importancegiven to them by those respondents who a nswered the ques tion.

What do you see as the biggest barriersto you working in a job?

Which o f thes e d o yo u use/ta ke pa rt inyour local community?

Libraries

Continuing/further ed uca tion

Leisure/sp ort ac tivities

P ub

Cinema

Community centre

Discos /night clubs

Youth club

Self advocacy group

Church

Total/percentage(of those answ ering)

22/56%

22/56%

19/46%

17/44%

16/41%

4/10%

3/8%

2/-

1/-

1/-

Social life and relationships

One-third of the sample are not happy with thenumber of friends they ha ve.

Only 19% of the sample say they are not comfortablesocialising with other people with autism or AspergerSyndrome.

26% are not comfortable socialising with people whoaren't on the spec trum.

54% ag ree or agree strongly that a long-term (sexua l)relationship with one pe rson is important to them.

But, o nly three of the respond ents (8%) are in a long-term sexual relationship.

Anecdotally from the one-to-one interviews, onecould place in order three priorities:

Finding a n a ppropriate job.

Making more friends (an d b uilding a wider va riety offriends).

Building a long-term (sexual) relationship.

While important for mo st of thos e interviewe d, the lasttwo points (and especially the latter), are not at allimportant for a few. Interestingly, these are the s amepriorities which parents identified, but they weightedthem in reverse order of importance: relationships,soc ialising then w ork.

Note on education: most of those interviewedmentioned bullying a t sc hool during the d iscussions.

What would most improve your life andmake mos t difference to you b eingincluded in so ciety?

24



Appendix OneInclusion & Autism

Autistic spectrum disorders are now known to bedevelopmental disorders due to physical dysfunction

of the brain and not, a s wa s once thought, the resultof emotiona l disturbanc e. Co mplex genetic fac torsare involved in most cases but other conditions, suchas viral enc epha litis before b irth or in ea rly childhoodmay s ometimes be implicated . The brain functionsaffected are those concerned with the drive tointeract with other human beings that is inborn inpeople who do not have a utistic disorders. Thisresults in what is often referred to as the ‘triad ofimpairments’ (Wing 1992) affecting social interaction,communication and imagination.

Autistic d isorders c an occ ur in w idely va rying deg reesof severity. Each a spect o f the triad ca n be ma nifestedin different wa ys, in different individua ls an d a t d ifferentag es in the sa me individuals, a s follows :

The range of impairments in

Social interactionAloof and indifferent to other peoplePa ssively a ccepting social approaches from othersActive but odd, repetitive and inappropriate

approaches to others

Social communicationAbs ence of d esire to co mmunicate w ith othersEcholalia a nd repetitive speec hGood grammar and voca bulary but speech used

only or mainly to ta lk ab out spe cial interests

Imaginative thoughtInab ility to a ttribute thoug hts, b eliefs or a ctions to

othersInab ility to play imag inatively with toys o r with other

childrenRepetitive stereotyped play with ob jectsImaginative idea s pursued in isolation from other

people

The triad of impairments ca n oc cur on its own b ut, inmost ca ses , i t is a ccompa nied b y other problems.These c an include one o r any numbe r of the follow ing:

Ge neralised learning d isab ility of any level of se verityfrom profound to mild

What are autisticspectrum disorders?

Langua ge disorders (receptive a nd/or expressive)Reading difficultiesDifficulties with number workP oor motor co-ordinationUnusual responses to sens ory stimuliProblems with posture and movementP roblems with sleeping, ea ting, drinkingPoor attention and hyperactivityAny kind of physical disability including epilepsy,hea ring impairment, etc

Psychiatric problems, especially anxiety and depression

Autism and Asperger syndrome are the clinicalpictures described respectively by Kanner andAsperger. It also includes o ther pictures sho wing theimpairments described both of which do not fitprecisely in the named syndromes .

It is not surprising that the triad, especially incombination with any of the other problems listedabove, leads to all kinds of difficulties in emotionalrespons es a nd beha viour. Children and ad ults withautistic disorders find the world, especially otherpeop le, very difficult to unde rsta nd. They find it ea sierto cope if people , objects , events a nd their ownac tivities rema in exa ctly the sam e all the time. Theyare repetitive and stereotyped in their actions anddread c hang e. They find it hard to generalise fromone situation to another. Those who a re moredisabled and have severe learning disability can havevery disturbed behaviour in response to change,including temper tantrums, aggression to others, orse lf-injury. Very often, the ir differences from othernon-autistic children o r ad ults with se vere lea rningdisability are not understood, leading to even moredifficult beha viour. Thos e who a re more ab le tend tohave low self esteem and are very sensitive to anycriticism. They have d ifficulty in as ses sing menta ls ta tes in others a nd in ant ic ipat ing responses a ndevents. In everyday social situations they ca nbec ome b ewildered a nd highly anxious. Their soc ialnaivety makes them vulnerable to exploitation. Ifchildren with autistic disorders who are of average orhigh intelligence are not diagnosed, their socialdifficulties may be interpreted as wilful, resulting in

punitive or other inappropriate responses thatexacerbate their difficulties.

In general, people w ith autistic disorders a re vulnerab lein any situation wh ere their condition is not reco gnised .This is pa rticularly evident in unsupported ma instrea meducation, or in special schools that do not specialisein autistic d isorders, and during the transition fromscho ol to a dult life.

25



Appendix twoInclusion & Autism

Paradigms

This paper is a summary of the thinking surroundinginclusion taken from a review of recent academic andeducational literature. The views do not necessarily reflectthose of the NAS. Indeed, the survey’s findings indicatethat the situation has improved for some pupils with autismand Asperger syndrome within mainstream settings.

Models

Commentators have widely differing views on the ways inwhich pupils with special educational needs should beeducated. Here are some of the main models proposed:

Separate provision for pupils with certain defined levelsof disability ie specialist schools for children with autism.These might be only for children with autism or mighthave a wider remit covering children with severelearning disabilities. There is little justification now for separate schools for children with moderate learningdisabilities.Integration by links between special and mainstreamschools for defined areas e.g. social (level one), lessacademic curriculum areas such as art, music and drama(level two) etc.Integration with special units within mainstream schoolswith mainstream curriculum as above e.g. start inreception with Learning Support Assistant and then moveto a specialist unit and integrate within mainstreamclasses as much as possible and as appropriate.Mainstream education with support e.g mixture of classroom support, some without support and somewithdrawal for special tuition still within school. Socialtime support might be offered for pupils with autism or

Asperger syndrome, for example breaks, lunchtimes.

There is a powerful lobby for inclusion philosophically andpractically. However, there is also no doubt that achievinginclusive practice is both difficult and requires significantrestructuring of provision and ideological commitment toimplement. Jolliffe (1992) is clear that the mainstreamschooling she received was entirely inappropriate for her particular needs as a pupil with autism. This could havebeen due to a lack of adequate support. Whilst she was an

able pupil and managed to move on to university, others maynot be so strong or fortunate. Whilst there are groups of ‘special school survivors’ Jolliffe and others see themselvesas ‘mainstream school survivors’.

Many parents have become very unsatisfied with currenteducational provision and have sought alternative provisionfor their children. e.g. Hillingdon Manor, Jigsaw andTreehouse schools have all been set up by parents for children with autism since 1998. Jordan, Jones and Murray(1998) review the various programmes specifically targeted

Inclusion in education towards children with autistic spectrum disorders. To use thephrase embedded in the USA legislation, the ‘leastrestrictive environment’ for pupils with autism may bespecial, segregated provision. On the other hand, Aldersonand Goodey (1998, 1999) provide evidence to suggest thatchildren with severe autism can be included in themainstream setting with benefits for all.

Howlin (1994) points out that all forms of education havetheir benefits and drawbacks. And all are variable in terms of the curriculum and quality of teaching and support offered.Certainly if education is to be inclusive for all it has to takeaccount of individual needs and monitor them continually.This will probably mean an individualised programme. Allchildren could benefit from such an approach. Whether it isrealistic to expect it for all, however, is debatable. However,much can be done to develop classroom structure andstrategies which enable all pupils to participate and learn for as much of time as possible e.g. through peer teaching or team teaching with learning support (Sebba and Sachdev1997).

The nature of autism makes it very challenging to providesuitable education with their peers for some, but not all,children with autistic spectrum disorders. The social andcommunication difficulties faced by children with autism and

Asperger syndrome and their often stereotyped or ritualisticbehaviour patterns can be a challenge within an inclusivesetting. Many parents have favoured obtaining specialistprovision in order to ameliorate these problems and optimiselearning in their children.

There are a number of specialist schools provided for children with autistic spectrum disorders in the UK, includingsix run by the National Autistic Society and several more runby local autism societies. The advantage of a centre of specialist expertise lies in being able to address the specificneeds of children with autism in developing their social andcommunication skills, reducing their ritualistic behaviour andoptimising the environment for them to learn. However, itmay not provide the more intellectually able children with theopportunities for development they need.

The right expertise can be provided in the mainstream solong as teachers and support staff are adequately trainedand resourced to meet the individual needs of every child onthe autistic spectrum. Specialist units may also be providedfor this population within mainstream or other settings.These enable students to be able to draw on wider facilitiesand a greater teaching curriculum. They help to move awayfrom the rather isolated nature of segregated provision,which is often exacerbated by geographical distance fromfamily and social networks. Even so there is evidence thatseparate units within a mainstream setting confirm a senseof separateness between those attending and their peerswholly included within the mainstream setting. This does notallow the benefits seen in fully inclusive settings to beshown, e.g. Jupp (1992) found that when five students withsevere disabilities were placed in mainstream primarysettings they were accepted and offered friendship, supportand encouragement by pupils, with social relationshipscontinuing outside school in the local setting, (though not for

26



Appendix TwoInclusion & Autism

the one child who was not placed in a local school). This isfar more difficult to achieve in secondary settings due to thesheer scale of the environment and the complexity of peer relationships and the increased need to conform.

Schools for children with autism are understandablyexpensive and few in number. There are more schools for awider range of pupils with severe disabilities and this, at least,allows pupils to be educated nearer to home. However, pupilswith autism have an unusual profile of skills and disabilitiesand this can lead to some problems (Howlin 1998). The other pupils with learning disabilities will tend to be globally delayedand therefore teaching strategies may be easily adapted totheir cognitive level. With autism, children’s developmentalprofiles are uneven and this can be very difficult for teaching,especially with a varied group of children involved.

One compromise is the establishment of partnershipsbetween special and mainstream schools, either throughpupil ‘sharing’ or where special school staff act as outreachsupport. The more successful links involve the sharing of complementary expertise and resources, offering professionaldevelopment on both sides (Ainscow et al. 1999). Crowther et

al. (1998) suggest that this dual institution provision incurssignificant additional costs.

Many children with autism depend on one-to-one teaching,at least for part of the day, and find it impossible to work co-operatively with other pupils. Impairments in imaginationand imitative skills make play and other joint activities verydifficult. These difficulties also apply to children educated

at schools for mild learning disabilities or emotional andbehavioural difficulties. Whereas the cognitivedevelopment of children with autism in this range may bemore advanced than those with other disabilities, their social and communicative deficits will lead to teachingdifficulties. They will also require a more directive input fromteachers if they are to make progress whereas other studentsmay need more stress to be given to independence and self-motivation. In some settings which combine the more sociallycompetent with children with autism, the latter may bebullied. With attention these problems can be overcomeand a sound educational environment created butsometimes this setting would not be at all appropriate for apupil with autism.

Some inclusion studies have indicated that the presence of a learning support teacher appeared to limit the contact theclass teacher made with certain pupils (Allan 1995, Thomasand Webb 1997). The use of learning support teachers inthis way may not be an appropriate use of inclusive practicebut it does illustrate a further dilemma. Is it reasonable toexpect the class teacher to interact with all class pupils?Might the provision of classroom support be an impedimentto social interaction and might it also hinder risk-taking,which can contribute towards learning?

Social inclusion conflicts with school improvement asmeasured by National Curriculum tests and GCSE results(Parsons 1999). Parsons argues cogently that there is aneed for exclusion from education not to be possible as is

the case in other European countries. Equality of outcome,rather than of opportunity, is the key.

A further dilemma expressed by Hornby (1999) in his reviewof policy is that between maintaining the need for acontinuum of provision whilst supporting the principle of inclusion. The reviews of research in Hornby’s earlier article(Hornby 1992) found little evidence that the goals of inclusion were being met. It appeared that the benefits of greater educational attainment, increased social skills,reduced stigma, increased self-esteem, greater racialintegration, improved parent involvement andindividualisation of instruction did not necessarily result from

including children with special educational needs inmainstream settings. Manset and Semmel (1997) in their review of eight different models of inclusion for pupils withmild disabilities concluded that a model of wholesaleinclusive programming that is superior to more traditionalspecial education service delivery models does not exist atpresent. Both Farrell (1997) and Salend and Duhaney(1999) found inconclusive results on the impact of inclusionon pupils with special educational needs. Hornby’s review(1999) finds a continuing lack of research evidence for theeffectiveness of inclusive practices, more particularly a lackof studies demonstrating that the outcomes of inclusiveprogrammes significantly improve the lives of those youngpeople with special educational needs.

27



ReferencesInclusion & Autism

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Howlin, P. (1994) Spe cial educ ationa l treatment. In: M. Rutter, E. Taylor and B. Hers ov (eds) Child and adolescent psychiatry: modern approaches , 3rd edn. Oxford: Blackwell.

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