1 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. 2 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 3 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 4 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 5 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. 6 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 7 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. 8 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. 9 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. 10 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 11 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. 12 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 13 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 14 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 15 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. 16 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, 17 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 18 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. 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