THE EMOTIONAL JOURNEY OF PARENTING
A CHILD ON THE AUTISM SPECTRUM

Parents of a child on the autism spectrum can experience a range of different feelings, which surface from time to time. There are no right or wrong feelings. These feeling are a natural and normal reaction to parenting. All parents respond to the demands of caring in their own way. Feelings are always individual and everyone will react differently. Regard your feelings as signposts. They will tell you when things are not going well and need your attention.

effects on parents

Some of the feelings that parents often say that they experience are feeling overwhelmed, guilty, stressed, confused, angry or depressed by the day-to-day demands of Autism Spectrum Disorders on being a parent.

Frustration

Parents will often face a lack of understanding from others. Friends, relatives and extended family may not appreciate the difficulties you are facing, or may not accept the reality of how an Autism Spectrum Disorder affects your child. Parents are often faced by others who believe their child is wilfully disobedient and simply a bad child. This can particularly be the case in the community, if the child has an emotional outburst in public.

Frustration can also arise when faced by clumsiness, lack of emotional response, challenging behaviors, angry outbursts, or an apparent lack of regard for others by your child. Feeling frustrated is a normal part of parenting for anyone - the key though is that your response is based on the early interventions you have chosen, not based on your feelings.

Anxiety

Anxiety about the future can result in fear, and wondering what level of happiness, development and independence your child will have as an adult. When they are likely to remain dependent, there are concerns about what will happen to an autistic child if the parents can no longer cope or pass away.

Guilt

Guilt can be a common feeling. Parents may feel responsible for the disorder occurring, not wanting to be a parent any more, losing their temper or being embarrassed by their child. Parents may particularly feel guilty about taking a break from parenting by using respite care, or placing their child in residential care.

Anger

Parents may become resentful if they are the sole parent or a partner does not do their fair share. They may become frustrated with their child if they regularly face challenging behaviors, angry outbursts, lack of communication or other signs of developmental delays. Parents may become angry from lack of support when friends don't make contact anymore, support services don't provide enough help and the focus always is on their child.

Sadness and loss

A sense of loss is often pervasive after a child receives a diagnosis of an Autism Spectrum Disorder. There is the loss of the exact life you had planned for your child, and often the loss of the life ahead you had planned for yourself. This grief can emerge at unexpected times - birthdays, the first day at school, special holidays. These feelings are normal from time to time. The key is to talk with your partner or other parents about it and maintain a positive outlook in the long run.

Grief is the emotional pain that comes about as a result of a loss, or a number of losses. It can be one of the strongest feelings experienced by parents and often causes great distress. Grief can go unrecognized because there has been no actual death of a child . Recognizing your grief, and talking to someone about how you are feeling can help. If feelings of sadness persist for a long time, or affect your life to a great extent, contact your family doctor or community health center.

Feeling stressed

Stress itself is not a negative phenomenon. In fact, we need some stress in our lives to feel motivated, a sense of achievement and stimulation. It is typically the day-to-day stresses which take a greater toll on a person’s physical and mental health because people are less aware of the cumulative effects.

Stress is a part of our daily lives, but too much stress can lead to physical and emotional exhaustion. Parenting an autistic child can mean being cut off from others and facing high stress over a very long period of time. Stress may bring physical symptoms such as headaches, or difficulty sleeping. Some people become very emotional or anxious. Others report feeling persistently tired and chronically unwell. Because we can’t always do something about the causes of stress in our lives, it’s important to learn to recognize stress and to try new ways of coping with it.

Physical signs of stress may include a lowered immune system, breathing difficulties, fatigue, sleep disturbance and muscular tension. Carers may also find themselves feeling out of touch with reality, forgetful, not looking after themselves, crying easily and not eating properly.

Feeling Depressed

Sometimes being a parent can feel like an endless grind. Over time, you can stop feeling angry or sad about your situation and instead just feel numb. Even happy times don't seem to lift you, and the simplest tasks seem to take too much energy. You may find you are sleeping too much, or waking early or during the night. You might feel worthless or agitated most of the time, and have difficulty making decisions. These changes may be signs that you are suffering from depression. Depression is a serious illness but is often overlooked. It is common and it is treatable. Talk to your doctor, who will help you find the treatment that works best for you.

How can parents deal with difficult feelings?

Feelings can sometimes become overwhelming and lead you to act in ways you don't like. It can become hard to think clearly about important decisions. Just as feelings are individual, so are ways of dealing with them. However, there is a way to deal with difficult feelings that many parents say is extremely helpful – talking to someone. Talking about problems can help, either to family and friends, to other parents in a support group, or to a counselor.

One possibility is to join a support group or get on the Internet and head for an autism or Asperger's forum. You can meet other parents in a similar position, have a break, get information and get support from others who know what your situation is like. Sharing ideas, feelings, worries, information and problems can help you feel less isolated. Sometimes family and friends don't understand the stresses of caring for your child. People in the support group or forum will understand completely!

Support groups bring together parents in local areas, sometimes under the guidance of a facilitator who is experienced in supporting parents. Often other parents are invited to present information and training. Your autism or Asperger's association can help put you in touch with parent support groups in your area.

Counseling

Counseling involves talking to someone who understands and can work with you to give you the encouragement, support and ideas to improve your situation. It can be a way to assist with the many changes in your relationships and roles, as well as dealing with the strong feelings associated with caring. Counseling can involve just you and the counselor, either face-to-face or over the telephone, so it’s important that you feel comfortable with the counselor you choose. Anything that is said is completely confidential, so it’s a good chance to talk about those things that you may feel you can’t raise with family or friends.

Counseling usually involves a limited number of sessions but can vary according to your needs. Some Counseling services are free. Private counselors charge a fee, although many are willing to negotiate their costs. Your local doctor, community health center, council or service provider may be able to assist.

Planning for breaks and health

You cannot care constantly without a break. It can be difficult, but ask for help. Ask family and friends and respite care services, but make sure the breaks are regular and frequent. Regular exercise, rest and nutritious food are all necessary in order to withstand stress. Try to plan your day so you get all three. Walking, swimming, yoga, gardening or dancing are good ways to get some gentle exercise. Learn to relax by listening to pleasant music, meditating or doing specific relaxation exercises can help you sleep better. Trying new vegetables or fruit, eating at regular times and looking for new recipes are good ways of making eating well easier.

Planning to keep friendships & interests

Try to relax and enjoy yourself. Maintain an identity of your own separate from being the parent of a child with autism or Asperger's syndrome. Keep your links to the world. Absorbing interests, having fun and relaxation are all good for your physical and mental health.

IMPACT OF AUTISM ON BROTHERS & SISTERS

Because siblings are such a large part of each other’s lives, it is not surprising that when one has autism or Aspergers syndrome, the others can be greatly affected — sometimes for many years.

Brothers and sisters often share a lifelong relationship. They greatly influence one another's behavior, personality and identity. The emotional bond that exists is often characterized by such dynamics as love, hate, jealousy, rivalry, companionship, solidarity, loyalty, competition, and affection. Although the onset of an Autism Spectrum Disorder is different for every child, there are some common experiences that siblings are likely to feel.

How siblings of an autistic child may feel

Siblings may feel jealous, resentful or ignored due to the extra attention an autistic child may need. They may experience difficulties adjusting to the behavior and communication style of the autistic child. In some cases, they will frequently be worried and become protective even if they are younger chronologically. Parents should encourage their children to discuss these feelings with them. In some cases, children may feel more comfortable talking to a family friend or extended family member. For those young people who do not wish to talk to anyone, encourage them to write down their feelings, by either writing themselves a letter, or writing in a journal or diary.

Siblings can be frustrated, stressed, angry, and embarrassed about their brother or sisters’ behavior at times. At the same time however, they may feel guilty and ashamed for these feelings. Siblings should be given permission to feel upset and to talk through their concerns and frustrations. In the long term, a positive outcome is that siblings often have an increased understanding of autism or Aspergers syndrome, and become more tolerant, responsible and mature. They may also be able to better accept their situation and realize their own special worth and set and accomplish their own life goals.

Strategies for assisting siblings of autistic children

The type of support given to siblings will often depend on such things as the age of the sibling, their friendship networks, familial support and their living environment. However, there are many complex processes impacting on how young people react to their brother or sister's Autism Spectrum Disorder. When assisting siblings one must keep in mind that each person should be listened to carefully and their individual experiences and needs assessed.

Encourage communication

Brothers and sisters can greatly benefit from having the effects of autism or Aspergers explained. If they are old enough, they can help in adapting their communication and behavior in line with strategies that the parents use. Your autism association may have age-specific material for siblings to help them understand Autism Spectrum Disorders.

Acknowledge contributions of siblings

It is very important that parents acknowledge the difficulties and sacrifices that siblings often make when their brother or sister has an Autism Spectrum Disorder. Many siblings put on a brave face and attempt to be strong for the entire family. No matter how unaffected siblings may appear, however, it is important that their contributions, trials and achievements are recognized. Acknowledging their difficulties, responsibilities and understanding is an essential ingredient in supporting siblings. It is also important that siblings are not always expected to provide constant time, attention or care to their brother or sister with autism. Siblings sometimes need time to themselves or to be with their friends alone for time out.

Respite and time-out with parents

Siblings still need some time out with their parents alone. They need to know they are still special, even if they don't have much time together. Do not assume that siblings know this, sometimes they need a reminder. Younger children sometimes display changes in their behavior when they fail to understand the inequity of time - especially when their brother or sister gets so much attention. Encourage the siblings to go out with friends on their own and to continue their sport, activities, school, hobbies and goals that interest them.

Click here to read a fact sheet on self-care strategies for parents.

See the Family and Carer issues section of the website for more information.

Click here for the full range of Asperger's and autism fact sheets at www.autism-help.org
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