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Information Sheet 05

Sibling issues and autism Living with autism is difficult for all family members. It is important to also remember the needs of brothers and sisters of the child with autism. They may have negative, angry feelings against the brother or sister who spoils games, destroys possessions, makes a noise and a mess, and causes the family embarrassment out and about. They may also feel guilty about having these emotions. This can result in frustration, possible aggression or withdrawal, and great sadness and regret about having to live with this disability. They may not want to bring friends home, have their brother or sister attend the same school as them, or admit to their peer group that their family is different. Family life and social life can be very restricted, constrained and disrupted by a child or adult with autism. It is very frustrating for siblings to have family outings curtailed, and for parents to refuse to go to events that might cause stress or anxiety for the child with autism when it would be fun for others in the family e.g. sports days, school fete, town carnival, funfair, bonfire, birthday party. This can cause a sense of family fragmentation, as parents try to divide their time between the person with autism and siblings. There may be resentment that they cannot be a ‘normal’ family and do the things other families take for granted. This may also result from a feeling that they are ‘second best’ because they have to compete for parental time and attention. Often a lot of time and energy is devoted to the child with autism, and a sibling may feel that they are never given priority. Equally, they feel that they are supposed to be understanding and supportive because their brother or sister has autism. The siblings’ own behaviour may deteriorate as an attention seeking strategy, causing parents further stress. They may worry about parents not coping and the family splitting up if there is a lot of disharmony, so they may keep their own worries about schoolwork, bullying or friendships to themselves, and struggle on alone because they do not want to be a burden. Siblings may feel that they have to be good at everything to counteract the difficulties with their brother or sister with autism. Conversely, they may rebel from always being well behaved, getting good marks at school or being successful by underachieving or misbehaving. Siblings of children with autism often find themselves helping parents with the difficulties their brother or sister causes and may find themselves in the role of a young carer. This may provoke resentment at the loss of a carefree childhood. Although they may not express their concerns, for fear of causing anxiety for their parents, they often worry about the future. Their concerns might be about the likelihood of having an autistic child themselves, or about what will happen when their parents die. All these different attitudes and responses to having a sibling with autism will be coloured by these things: • The nature and severity of the disability • The position in the family of each sibling and the child with autism • The amount of information about autism and their sibling’s diagnosis that they have been given. • The responses of other family members will also influence their opinions and impact on their relationships.

How to help siblings: • Provide opportunities for siblings to meet other brothers/sisters of individuals with autism, and share their experiences and emotions. • Keep them informed and involved in decisions about their sibling.

Registered Office: Autism West Midlands, Regent Court, George Road, Edgbaston, Birmingham B15 1NU Registered Charity Number 517077 • Registered Company Number 1953344 (England)

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Sibling issues and autism • Give them some ‘special time’ with parents, away from the other siblings including the one/s with autism. • Help them feel valued for their own sake. • Help them understand it is ok to express dissatisfaction with the autistic sibling and the unfairness of having to live with autism. • Give them time and opportunity to live their own life, without guilt. • Read books with them to help them understand they are not alone with these feelings and to acknowledge the uniqueness of the sibling experience and their on-going role in the life of their brother or sister with autism. • Plan for the future, so the burden of responsibility is reduced. • Build a circle of support and seek out available services to support the whole family and the individuals within the family e.g. a young carers’ group, short term respite. The majority of siblings grow up as well-adjusted, caring individuals who may well go into professions where they can make effective use of their experience of growing up with autism. Although they may feel they have had a tough time in childhood, they usually do not suffer lasting damage from the experience and may even come to appreciate the benefits of growing up in a ‘different’ kind of family.

Further reading: Attfield, Morgan: ‘Living with ASD – Guidance for Parents, Carers and Siblings’ Fiona Bleach: ‘Everybody is Different’ Julie Davies: ‘Children with Autism, A Booklet for Brothers and Sisters’ and ‘Able Autistic/Asperger Syndrome, a Booklet for Brothers and Sisters’ L.Gorrad: ‘My Brother is Different’ J.Jackson: ‘Multi Coloured Mayhem’

Registered Office: Autism West Midlands, Regent Court, George Road, Edgbaston, Birmingham B15 1NU Registered Charity Number 517077 • Registered Company Number 1953344 (England)

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Sibling Issues and autism