What can they do about it

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                         What can they do about it?


About the author

At present I am undertaking my fourth assignment as a mature part time

student. I work as a full time learning support assistant in an assessment-

based class, which is attached to a school for children with moderate learning

difficulties. We have a number of places throughout the school for

statemented children with autistic spectrum disorders (ASDs), from within the

local catchment area.



We have at present nine children attending, ranging in age from three-four

years. Each child is referred via a doctor, Educational Psychologist, health

visitor, speech and language therapist or portage worker having had concerns

about the child’s development. These children all have multiple and complex

learning difficulties, including physical and sensory impairments. Related to

this all the children are identified as needing speech and language therapy.



A high number of our children attending demonstrate the triad of impairments

in one-way or another (Wing and Gould, 1979). At present the number of

children with ASDs in our area seems to be increasing. Certainly the number

of referrals of children with a diagnosis of ASDs has risen significantly. I am

in a position to gain hands on experience, but as each child is different we

have to strive to find a strategy or approach that will hopefully work for each

individual.
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Introduction

The focus for this assignment is to reflect upon what is involved with advising

a family caring for a child with an autistic spectrum disorder (ASD). I will be

looking at one particular problem that a family may experience. I will identify

what support might be available to them and evaluate what it means to give

‘good sound advice’.



Assignment map

First I will identify from the literature the type of issues that affect families.

Then I will introduce a scenario that might be a typical example of a problem

that I might be asked to support a family with, in my role as family advisor. I

will also make clear the need for sensitivity when advising the family. I will

also look at the potential systems of support that are available to the parents.

After I have then explained the advice and support that I would offer the

family, I will finally summarise the main arguments made and assess how

useful my advice might have been.



Literature review

It appears that the tendency for ASDs to run in families is well documented

(Frith, 1991). This is very much the case within my work place; we have

several children who have siblings or extended family that have a diagnosis or

have difficulties within the area of the triad of impairments (Wing, 1996).



Through personal experience it appears many parents experience difficulties

in the process of getting a diagnosis for their child. Concerns will be raised
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with the Health Visitor and General practitioner, with the parents left feeling

that no one believes the difficulties they experience. Professionals are often

very reluctant to refer the child for further assessment. This has often been

put down to the lack of knowledge from the doctors themselves (National

Autistic Society, 2000). Parents can, under the Patients charter, (1991)

request to see a professional of their choice, e.g. paediatrician, psychiatrist

and clinical psychologist. Through the National Health Service these

assessments are free of charge. However some parents prefer to go through

the private channels of assessment. Once it has been accepted that a

referral is needed it can take many months. One parent tells how she rang

every day to get an appointment; she felt her insistence was her only way

through the system (December, 2003). Once a diagnosis has been given

parents are often left stunned, only being given leaflets and phone numbers to

contact for help and advice. Many in this instance become angry and

question the professional’s ability Nissenbaum, Tollefson and Reese, 2002).



Gray (2003) found that mothers in particular, experienced considerable guilt,

loneliness and depression about their child’s disability and, Futagi and

Yamamoto (2002) found that the earlier a child was diagnosed, the sooner

parents came to accept the diagnosis. Anna Kennedy (1999) describes how

she felt her world had come to an end when her child was diagnosed.

Pressure builds as in many cases fathers finds it difficult to accept the

diagnosis, for example a father of a child from our setting took a job away

from home as his way of coping, causing the relationship to falter.

Grandparents and extended family often fall by the way side as they look
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upon the child as naughty and out of control. This leaves the family feeling

isolated and asking the question ‘Why us’? (Parent-to parent, 2001).



In the family home, children can be extremely restless, destructive and noisy.

Often they take to running away if an opportunity arises. Sleep deprivation

takes its toll on parents and other family members; it appears that many

children do not need sleep. Many will smear faeces; tip furniture and

electrical goods damaged beyond repair. Outings are often impossible, as the

child cannot cope with changes outside the home. At times parents will be

seen red faced, harassed and struggling with a screaming, kicking and furious

child. Parents often have to struggle on as their child’s behaviour patterns

have become well established and hard to change (Dickinson and Hannah,

1998). The child’s routines may also be so rigid, thus taking over other family

needs.



Siblings are also very much affected within the family unit, they may have

deep affection but at the same time feel resentment. Demands on parents

are often so great that siblings just appear to have to get on with their own

lives, with little support from the parents. Continually they may be on the

receiving end of violent tantrum behaviour or their property may be constantly

interfered with (Stanton, 2000). Many move from the family unit for support

thus adding extra strain on parents, making them feel they are failing even

further. Parents will strive to get some respite care for their child so as to give

quality time to their siblings; it appears that this facility is now being reduced.

       ‘Only two or three years ago ‘they’ decided to cut back on respite in our
       Area and families were devastated. It is bad enough when a facility
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       Doesn’t exist, but when one you have is taken away it is almost worse’.
       (Rankin, p96, 2000).

One parent described (February, 2004) how taking respite care to give time to

other family members, she was penalised in her welfare allowances. Lack of

knowledge from the respite carer’s in ASDs can lead to the child being

brought home early.



Children with high functioning ASDs often cope well in a mainstream school

setting with some support. Others may need a more complex approach to

learning. Jolliffe (1992) believes that children with ASDs should never go to

ordinary schools, because the suffering will far outweigh any of the benefits.

Peers (2003) relates that she was terribly bullied in a mainstream school as

every one thought she was odd (Woman, 3rd, 2003). At present specially

adapted schools for learning are becoming less available due to government

cutbacks and closures, and a political and legal focus on the right of all

children to attend their local mainstream school. Charfield School famed for

the teaching of autistic children in London is due to close if Wandsworth

council get their way. ‘I am extremely angry, livid and insulted that the

officials have zero sympathy for our kids’ (The Times, 18th, 2003). Under the

Education Act (1980), parents can state a preference for a particular school.

Two sets of our parents have had constant battles with our local education

authority to get specialized out of county provisions for their boys. The

pressures on the families have almost brought them to breaking point.

Thankfully after twelve months the boys will move onto a more appropriate

setting.
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Play skills do not develop in accord with the usual developmental pattern

(Cumine, Leach, Stevenson, 2000). Families experience difficulties it they try

to mix their child with others. It will often be the case that the child will remain

solitary, intensely scrutinising just one object, holding it close to the eye for

visual inspection. Parents become embarrassed, feeling others will be

looking and passing comment on their child’s restricted play (Lewis and

Boucher, 1988).



Difficulties with caring for the child can become too much for the parents and

naturally old age takes its toll. Added pressures arise as to who will take care

of their child. This so often falls on the shoulders of family siblings

‘Eventually, the responsibility will fall solely upon me. I imagine I may have to

move my own family back to California to visit every weekend’ (Time, 15th,

2002). The costs of keeping a loved one in care and the fact that appropriate

residential care are not always within easy travelling distance poses as a

huge burden to the family. Autism is a life long disorder, when people say he

will grow out of his autism as he grows older, I always reply ‘He will always be

autistic’, (Stanton, p 122).



Scenario

Parents of a recently diagnosed child have made an appointment to visit the

assessment class. The child has been attending a local playgroup setting and

it was here that concerns were raised about his development. There has

been support from a local educational psychologist and it was at his

suggestion that parents look at educational settings within the local catchment
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area. On arrival to the class parents were very nervous and seemed very

confused about the education system. It appeared from the parent’s

conversation that the psychologist was very keen for their child to attend a

mainstream school. However with the child’s young age and difficulties

parents were not sure this would be the correct setting. They were keen to

know what we could offer their child and the type of questions that they should

be asking in other placements.



My role as family advisor

The way in which parents of a child with an ASD are treated by a paediatrician

or a specialist at the time of diagnosis is of great importance. It is likely to

have had considerable affect on their emotional reactions and acceptance of

the diagnosis and perceptions of the professional help they are receiving.

The need for counselling and practical support is likely to be continuous, long-

term and the process of adjustment, and acceptance of, their child’s

difficulties is not easy. It is imperative that we build up an atmosphere of

mutual trust, sensitivity and respect for all involved. Parents find it hard, as

often they have been misjudged, labelled, and feel complete failures.

Meetings very often occur in the home setting, giving cause for

acknowledgement of family and cultural traditions and making the parents feel

welcome in any contact that we have with them is essential (Hornby, 1995).

In this situation we must also remember we are not there to look at the home;

we are there to help the family and child.
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Working with parents of an ASD child can be a difficult task because of the

multiple problems that must be addressed. These include issues of parental

expectations of the child, parental guilt and/or allocation of blame, appropriate

placement for the child, practical help for the family, and reducing emotional

pressures placed on the family. When addressing the family it is appropriate

to find a starting point of which they feel comfortable, and often this will be a

huge priority for them.



Throughout my involvement with the family I must feel confident and have a

wide knowledge and experience of normal child development, and be

prepared that I will not know everything but I can go away and find out the

particular problems created by the child with ASDs. From experience we

have to explain and discuss with parents the nature of ASDs, its primary

impairments and possible consequence. In this situation we have to be tactful

and sympathetic as not all children develop in the same manner, and certainly

each parent will react in very different ways. We must be open and honest

when parents ask questions, however over emphasis on difficulties that they

may encounter in seeking support in the early stages may lead to total

rejection in the later stages. Taking notes helps refer to any requests that

have been made. (In many cases parents tend to wander off track when they

feel nervous). Discussions I have with parents should wherever possible be

kept confidential, asking permission to talk to others if the need should arise.

Time given to discuss matters should never be rushed in any way, always

allowing the parents to return if they need to talk further.
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Potential systems of support

Educational psychologist

The psychology service – works with schools to promote good educational

practice with all children and young people. Works with teachers who are

concerned about the progress of individual children to find ways of meeting

their needs in school. Completes a report for every child undergoing a multi-

disciplinary assessment. Works with pre-school children who are facing

difficulty with learning, behaviour and development. Consults with parents

both for information on children and to ascertain their views on their child’s

educational needs.



Parent partnership

Support for parents through statutory assessment process. Provision of

information for parents on special educational needs. Referral of parents for

support to ‘independent parental supporters’ (volunteers). To encourage and

support schools setting up support groups for children with special

educational needs (SEN). Link statutory/ voluntary organisations re. SEN.



Assessment class

Within school we have a meeting each term where parents are invited to

come along and meet with other parents. This has been set up with the help

of the school nurse and Foundation Stage co-ordinator. Parents are able to

share concerns and ideas with each other. If a request is made for a

specialised speaker every effort is made to accommodate these needs.
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Parents and Children Together (P.A.A.C.T)

A parent based voluntary support group set up by a small number of

concerned parents, in conjunction with the Child and Adolescent and Family

Services in the local area. The group have two meetings morning and

evening on the first and third Wednesday of each month. The meeting

provides information, invited speakers, social and physical activities are also

organised for the school holidays. These include fitness sessions, gym play

sessions, Xmas disco party, swimming, football etc. There is also a newly

introduced library where books can be loaned.



Autistic Spectrum Children Unlimited Support (ASC – US)

A parent led support group at a school twelve miles away. Their aim is to

encourage parents and carers to feel they are not left feeling alone. The

group encourages invited speakers, discussion groups etc.



Local National Autistic Society

The secretary for the National autistic Society can be contacted locally. This

person is a full time teacher who has a son with autism, so has a very good

understanding of parents needs and concerns.



Find Out About Autism Group (FOAAG)

Siblings group held one Saturday of each month at the local family and

adolescent centre. Siblings are able to attend. Learn and share information
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about what it is like to live with someone who has an ASD. Children can

attend from 6yrs onwards.



Help

A programme to provide parents and carers, with post diagnosis information

and advice, to develop their understanding of ASDs.



Parent line Plus

A free telephone help line, where parents can call and talk in confidence

about their problems. Often a good help to parents as they find it difficult to

express their concerns with someone they know.



The Family Trust Fund

Provides grants and information related to the care of the child. Grants can

be given for e.g. washing machines, holidays, leisure activities and other

items related to the care of the child.



Parent To Parent

Parent to parent is a confidential telephone support service for parents of a

child with an ASD. Parents can call at any time and leave a message on the

free phone number. (Volunteers are all parents themselves).



Share The Care

Help, advice and information service for all family carers who are looking after

someone in the community.
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Strut In The Community

Care in the community, youth clubs, play schemes and after school clubs for

children with special needs. They offer respite care for children over the age

of five years.



Toy Library

To provide developmental stimulation through play via in house play sessions

and the loaning of equipment. Open to all children 0 – 8 yrs and all

individuals with specific requirements.

Tuesday – Friday 10 –3pm. Saturday mornings only.



From experience parents find the help and support from the parent

partnership scheme very beneficial. Their aim is to support parents of

children with special educational needs in whatever manner is needed. They

give support in areas e.g. regarding the statementing process, supporting

parents at reviews / meetings and tribunals. They will also support parents

with letters / forms / parental contribution to assessment. Along with this they

have a confidential parent help line to discuss any concerns they may have.



Advice given to family

Educational settings vary in many ways for the individual needs of the child. It

is essential that parents are directed and given these choices. The needs and

talents, strengths and weaknesses of the individual child must be carefully

considered – no one type of school will benefit every child with autism.

Parents having made the initial move to visit the school should be given
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sufficient time to look around, observe and speak with teachers and staff who

will have contact with the child in question. It is vitally important that the

meeting is not rushed in any way. In general when visiting the school there

should be a calm, quiet and predictable atmosphere (Christie, 1998). It is

essential that the school is well structured and follows a timetable reliably;

structure is essential for the child with an ASD.



The parents having made an appointment to discuss their child’s educational

setting should be taken to a comfortable room, where there will be no

distractions. It is up to staff to make the parents feel welcome and reassure

them that they are there to help support wherever they can. It is essential to

ask parents if they have any thoughts on the child’s educational setting, and

what they want to achieve for the child. With out being intrusive we can start

to make suggestions on what types of questions they would like to ask

      Is there a satisfactory pupil-to-teacher ratio? Some children need more

       support than others.

      Will the school provide any specialist services, e.g. music therapy,

       speech and language therapy, a sensory room?

      Is it a large school? (Would your child be able to cope in a big school

       with a large number of pupils?)

      Does the school have a flexible approach? Would staff be willing to

       accommodate any special requirements your child may have/

      What does the school see as your role? Will they involve you regularly

       in assessments of your child’s progress? Will they inform you of any
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       changes in your child? Will they be willing to work with you to ensure

       your child can reach their potential?

      Will all staff be able to recognise your child and be aware of the way

       they communicate (this can be very hard in a large school)

      Are all teachers aware of, or would they be willing to learn about, the

       special educational needs of the pupil on the autistic spectrum?

      Would your child be fully assessed on starting the new school?

      Does the school follow a particular approach? Do they use a range of

       approaches and models to get the best from your child, or do they try

       to fit your child in to one rigid model?

      When you visit the school, try to visualise how your child would

       respond to that environment: will it suit him?



Home Visits

My setting has no facility at present to make home visits due to staffing

limitations. However parents are invited into the school on several occasions.

They often initially visit on their own without the child, if they appear interested

in our setting we encourage them to come back with their child. This way we

are able to meet the child introduce him to the setting, also allowing parents to

get a feel of how their child would cope. We are able to discuss forms of

communication between home and school; this is often difficult due to the

child having limited language skills. As a school we use a home/school book,

which travels between home and school on a regular basis. Smith (1982)

suggests there are three main reasons for using this system:

      For more specific communication and instructions
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      For active collaboration on joint teaching ventures.

      For general information

Messages in the daybook can also lead to follow up telephone calls or visits to

school if necessary.



Initial visits can also help identify the best ways for the child to start school

e.g. by periods of part-time attendance, any special difficulties about eating,

toileting, medical problems and transport.



Access to school staff

Giving parents an opportunity to meet with a senior member of staff, who will

be working with the child, also opens up an opportunity to discuss contact with

the teacher in question. Times can be given when a teacher is available to

take telephone calls, unexpected calls in teaching time can cause several

problems.



School meetings

Most schools provide opportunities for parents to attend school for various

reasons. Meetings are held to provide opportunities for parents to meet

visiting specialists such as psychologists, speech therapists, physiotherapists

or doctors, not only to talk about their child but also to learn more about the

work of these specialists and how they relate to teachers. In many schools

they have a small parent group where parents can meet informally or for a

particular purpose.
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Review meetings

The school should hold regular meetings to review the progress of each child.

Parents are invited to attend either the whole or part of such meetings. These

meetings can be very productive, as school will have developed a curriculum

plan with recording systems. Parents are able to contribute their own specific

goals for their child.



Transport

For many children with a disability attending school, they have access to

transport provided by the Local Education Authority (LEA). Careful planning

is needed to get the arrangements right. Some parents also object to the use

of special transport, as it sets the child apart from other children in the family

and neighbourhood (Rheubottom, 1982). The need for good escorts is

essential as they can be a vital link between home and school, as parents

don’t have the everyday contact with school.



Conclusion

References to texts show that today the public have a better understanding of

ASDs. This has been increased through press coverage and television

programs. However it still appears form a recent parents meeting that I

attended, that many parents are still facing difficulties with the general public

and professional alike. A feeling of embarrassment, isolation, lack of

knowledge and few facilities to accommodate their child’s needs still appears

to be the main problem. While parents have the most active part to play in the

child’s life they still appear to struggle with diagnosis, battling for services,
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dealing with difficult behaviours, insensitive reactions and restrictions on their

lives in general. One parent described the feeling of ‘No one understands

what we are going through’ (June, 2004). It certainly appears that a better

understanding of the difficulties is needed to help support parents and build

their confidence with what they call the outside world.



Parents often feel a need to become involved in support groups, actively

looking for answers, attending conferences and searching the net for

information. The information they require does not readily appear to come

from the professional at the time of diagnosis and beyond. Through these

support groups many parents make good solid and long lasting friendships

with others in the same situation as themselves.



Family difficulties certainly do not diminish; as the autistic child grows older in

fact they can become worse. Odd behaviours that were seemingly acceptable

as a young child may not be so in adolescent years; Puberty and appropriate

educational facilities also still pose a problem. From the support I have given

the family, I hope to have given them a better understanding of what I feel is

needed in an educational setting. As each child is very different his/her needs

will not always be the same as the next child. Parents need to feel confident

in their choice knowing that the child is happy and will respond well to the

environment.



I personally feel more has to be done to support these families both in the

home and educational setting. Through contacts with local schools it is very
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clear that little is still known in the area of ASDs. As the number of diagnosed

children increases, the need for knowledge and understanding certainly needs

to be increased. Through teacher training colleges maybe more time is need

exploring these specific areas. If teachers were more aware of the difficulties

faced by pupils and families they would be better prepared to cope and

support appropriately.



References

Christie, p. (1998) Antecedents to behaviour, Sutherland House School.
Nottingham.

Cumine, V. Leach, J. and Stevenson, G. (2000) Autism in the early years.
A Practical guide. London: David Fulton.

Dickinson, p. and Hannah, L. (1998) It can get better: a guide for parents and
carers. London: National Autistic Society.

Education Act 1980: visited 14 / 03 / 2004
http://www.edu.gov.on.ca/eng/general/elemsec/speced/edact.html

Frith, U. (ed) (1991) Autism and asperger Syndrome. Cambridge University
press.

Futagi, Y. and Yamamoto, Y. (2002) Disclosure of a diagnosis of childhood
autism and parents acceptance of the disability (Article in Japanese) No to
Hattatsu, vol34 (4), pp. 336 – 342.

Gray, D. (2003) Gender and coping: the parents of children with high
functioning autism. Social stories and medicine, 56, pp 631 – 642.

Hornby, G. (1995) Working with parents of children with special needs.
Guildford and Kings Lynn: Biddles Ltd.

Jolliffe, T. Landsdown, R. and Robinson, C. Autism: a personal account.
Communications, vol 26 (3) December 1992.

Kennedy, A. (1999) Not stupid. Video diaries. BBC 2. 14 / 08 /1999.

Lewis, V. and Boucher, J. (1988) Spontaneous instructed and elicited play in
relatively able autistic children. British journal of development psychology, 6,
pp. 325 – 339.
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National Autistic Society, (2000) The autism handbook. National Autistic
Society.

Nissenbaum M.S., Tollefson, N. and R. M. (2002) The interpretative
conference sharing a diagnosis of autism with families. Focus on autism and
other developmental disabilities, vol 17 (1), pp. 30 – 43.

Parent-to-parent on special needs (2001) Autism: An autistic child in the
family. Positive parenting publications.

The Patients Charter for England (1991): visited 14 / 03 / 2004
http:www.pfc.org.uk/medical/pchrt-el.htm

Peers, J. (2003) I had to learn how to behave. Woman. November 3 rd 2003.

Rankin, K. (2000) Growing up severely autistic, They call me Gabriel. London:
Jessica Kingsley.

Rheubottom, S. (1982) Handicapped child equals taxi! In Mittler and
McConachie, op. cit.

Stanton, M. (2000) Learning to live with high functioning autism. A parents
guide for professionals. London and Philadelphia: Jessica Kingsley.

Smith, B. (1982) Collaboration between parents and teachers of school age
children. In Mittler and McConachie, op. cit.

Time, ‘My Brother’, July 15th, (2002).

The Times, ‘Parental Choice’? Not Here December 18th, 2003.

Wing, L. (1996) The autistic spectrum: a guide for parents and professionals.
London: Constable.

Wing, L. and Gould,J (1979) Severe impairments of social interaction and
associated abnormalities in children: epidemiology and classification, j of
autism and developmental disorders, 9, 11 – 29.

				
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