Autism Spectrum Disorders start without diagnosis. And ASD is unexpected. The consequences that affect the children are they do not have close relationship with their siblings, their grandparents and even with their parents. ASD children are unable to feel love from their family, especially on mother. In the school, they cannot make a good friendship with other same aged children. In their childhood, they are poorly having imaginative or creative plays. In their teenage life, they start to recognise that they are different. For some of them, they might be encouraged to learn more and try to improve their social skills when they meet the barriers however, others would feel depression, anxiety, or other mental disorders. They may not be able to find pleasure in their daily activities and the environment. People with ASD will fail to respond the emotional signs in human society. Because they are unable to build up the relationship with other people, they would not be able to understand others. This awareness may make them be helpless and hopless.
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B. the Family / whanau
I think when there is a child with autism spectrum disorders, their family would suffer more from it. For their parents, they might compare with other children of same age and feel desperate and hopeless. They have to observe their children carefully. Also parents will have uncertain future for their children. Parents also are not able to have their own personal dream, future and even their job because they need to take care of their children. If their children are growing up, taking care of them is very hard and finding a job for them is also a big challenge. Stress is one of the most things that family or whanau will suffer from their children’s disorder. Specially in sleeping problem, parents will have very stressful night everyday and they will burnout so easily. For the family and whanau, there should be lots of caring centre which established by the government so they can use it without a pressure of money spend.
C. the Carers
When carers are taking care of children with autism, they have to keep their eyes on them every time and every moment. Because children with autism cannot have sufficient sleep at night, they become impatient and anxious. This might lead them to have emotional or physical abuse. When parents fail to manage their children’s behavior, children have many bad habits like splitting on the ground, frequent screaming and hitting others. Carers must be aware of their client’s health and don’t let them stay in dangerous situation. Also Carers need to be listenable for their family’s complaints.
signs and symptoms associated with people with Autism Spectrum Disorder(ASD)
Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Some children are mildly impaired by their symptoms, but others are severely disabled. In general, they fall into three areas:
Repetitive and stereotyped behaviors.
Most children with ASD have trouble engaging in everyday social interactions.
Make little eye contact
Do not readily seek to share their enjoyment of toys or activities by pointing or showing things to others
Misread or not notice suitable social cues – a smile, a wink or a grimace – that help them understand social relationship or interaction
Have difficulties following directions, being cooperative and doing things on other people’s terms
Their facial expressions, movements, and gestures are often vague or do not match what they are saying. Their tone of voice may not reflect their actual feelings either.
Communication difficulties- both verbal (spoken) and non-verbal (unspoken, such as pointing, eye contact, and smiling)
Develop language at a delayed pace
Learn to communicate using pictures or their own sign language
Use words that seem odd, out of place, or have a special meaning known only to those familiar with the child’s way of communicating.
Repetitive and stereotyped behaviors-repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways
They may insist on eating the same exact meals every day or taking the same exact route to school.
Children with ASD may become fascinated with moving objects or parts of objects, like the wheels on a moving car. They might spend a long time lining up toys in a certain way, rather than playing with them. They may also become very upset if someone accidentally moves one of the toys.
Other related disorders
Dislike or show discomfort from a light touch or the feel of clothes on their skin
Experience pain from certain sounds, like a vacuum cleaner, a ringing telephone, or a sudden storm; sometimes they will cover their ears and scream
Have no reaction to intense cold or pain.
Impacts on the diverse dynamics of the family/whanau
To care of children with autism spectrum disorder, family members spend a lot of time and put efforts till their energy burns out. It makes their parents difficult to have a moment for their own interest and their lives. They lose their relationship and social contact with other people. It brings a lack of communication and finally it occurs decreasing of life quality. They cannot spend time for their parents as well because it is too busy to care of their autistic children. The other children in the family would be lack of love because their parents put every attentions and every interest to autistic child so parents cannot spend time for others. The family also experience role changes. Change of the roles requires new skills and grabbing with new ideas. They need to collect the information about ASD, search for the programs or facility supports. On the other hand, change of roles empowers family. Perhaps, children with ASD’s siblings might not like to walk or, even, talk with them.
4. The way in which the individual, family/whanau , and carers interact and respond to evolving stressors
There are many ways that individual, family, and carers interact and response to stressors. Autistic children focus on what they want to and what they can do. Need to get information and supports from the family or friends when take care of them. Family and carers can receive a help from their friends. Friends can take care of the autistic children and family and carers can have a break to recover their energy. For example, having a catch up with good friends, sharing the worries and information with other family member who has autistic children and attending activities or teachings related of supporting ASD people are very helpful, cheerful and encouraged to the group of people who have a lot of stress from caring autistic people. They need to make best product with environment, help and support of others who are around them. Visiting a Day care centre or hiring of a community support worker can be a good idea as well.
5. The way in which the Code of Right is applied to people with Autism Spectrum Disorder (ASD)
The right to effective communication
People with autism have the right to effective communication in a form, language, and manner that assists the client to understand the information provided. Where necessary, this includes the right to a competent interpreter.
Rights in Respect of Teaching or Research
People with autism have the right to give informed consent to participate in research, including risks, and whether this treatment is new (or new for this purpose).
Right to be Treated with Respect
People with autism has the right to be treated in a respectful manner, regardless of her/his race, culture, colour, religion, sex, age, mental or physical disability, class/economic position, sexual orientation, gender identity, diagnosis, inpatient status, or legal status, Like using recognized name, respect for choice and privacy.
6. The needs ( support and other) which I have identified for the people with Autism Spectrum Disorder (ASD)
Child Disability Allowance
Child Disability Allowance is a payment made to the main carer of a child or young person with a serious disability. It is paid in recognition if the extra care and attention needed for that child.
Services for children with special education needs
Some service are providing information about play techniques to teach the child new skills, offering ways to improve social and learning skills and manage behaviour and co-ordinating physiotherapy, occupational theraphy and equipment.
Support for students with high special education needs
Some supports are the Communication Service to support children who have difficulties with talking, listening and understanding language, the Severe Behaviour Service to assist children experiencing behaviour difficulties.
2) People with Dementia
1. Consequences of people with Dementia in relation to
Those with dementia need help with everyday tasks such as showering, dressing, etc because they forget how to do them. They no more have interests in their hobbies and what they do unlike how they used to be. At the same time, they do not want education and trying out new ideas. They also tend to avoid communicating with others as they cannot respond and catch complex ideas since they make them uncomfortable. People with dementia may have to give up their work due to the lack of planning, organization and decision making-skills. They have difficulties going out by themselves, because they cannot find the way back home. They become less interested in their surrounding environment and take less care about others. They tend to find someone to blame when something is wrong. During Dementia progress, they sometimes confuse children or grandchildren to their relatives or friends. This can hurt their family members. They find it hard to name objects and how to use them. Furthermore, they require reminders to eat, wash, dress and using toilet. Their communication skills drastically worsen because they get difficulty understanding what is said to them and their words and sentences only make little sense. Hence, people with dementia totally become isolated.
B.Family / Whanau
They cannot believe that the one they love have dementia, and it is unacceptable when the person with dementia fail to recognize them. They feel shame and are unwilling to let others know. When they fail to cope with the difficult situation, they feel anxious, irritable and impatient with themselves and others. They lack energy and burnout which result in the decrease in strength of their immunity system and the increase in the frequency of getting the flu and becoming sick. Thus, they lose concentration and become forgetful which lead to bad performance at work. They express negative thoughts about themselves, thinking they are losing control of everything like a failure. They need to deal with emotions like grief and guilt. Watching the person slowly deteriorate can be particularly stressful as often the family members feel they have lost the person they love. When they think that they have not done or are not doing enough for the person, they feel guilty.
Reduced leisure time and personal freedom is one consequence on the carers. They may not be able to spend as much time as they would like with their friends and colleagues, loss of regular contact with friends who can share hobbies. They become so involved in caring for the person with dementia; they do not take care for themselves or their own health. They have not found the time to take a moment that day to smell the scent of a rose or to look at the beauty of nature. Heavy workloads or hard physical works cause tiredness, loss of appetite and poor digestion. Most of the carers experience tension or pain in the muscle, chest, abdomen and shoulders. Getting responsibility for maintaining standards and for observing and recording changes can be very stressful. It is annoying when they have conflicts with others in the support team. Some of the carers may suffer oral or physical abuse from the one they are caring for; it is unacceptable and hurtful which leads to the decision of giving up the job
2. The signs and symptoms associated with people with dementia.
Dementia is a broad term to describe the symptoms which caused by a large of illness that result in a progressive decline in a person’s ability to remember, to think, reason and response to others in an appropriated way. The signs and symptoms of dementia:
Gradual memory loss
They have trouble in remembering the telephone numbers, where they put their bag, keys, and wallet, what they did yesterday.
Repeating statements or questions
They can constantly repeat one or more phases or sounds again and again.
They wander around home or streets, perhaps at night, sometimes becoming complete lost.
Decline in ability to perform routine tasks
A person might have trouble with certain skills such as dressing. As the dementia progress, people become slower and more disorganised.
They may show poor judgements and have difficulties making judgements.
Disorientation of time and place
They confuse about daytime and nighttimes and fail to find their way home.
Changes in mood or behaviour
They take their clothes off inappropriately and become angry or unset or distresses very rapidly.
Changes in personality
Some people with dementia retain a similar personality to their earlier life, although sometimes a little exaggerated – the person who was always irritable, stubborn and difficult to get on with may remain so. The person who was friendly and affectionate may remain sweet and loving.
Loss of language skills
They are unable to express themselves using a whole sentence, just repeating one word or phrase again and again
Or their speech may make little sense.
Difficulty handling money
They forget to pay their bills and manage their account.
Loss of initiative
They loss of motivation and feeling of worthlessness and uselessness
Deterioration in driving skills
Some may no longer drive their car.
However, a person with dementia may not experience all of these symptoms.
3. Impacts on the diverse dynamic of the family/whanau
When there is a person living with dementia in a family, it affects all the family members who are challenged physically, emotionally and financially. When the dementia develops as the illness progresses, those who are close to them are constantly faced with the loss of the person as they used to be, the gradual loss of the person as their companion, and the loss of their relationship. Children would be angry or may withdraw if it is too painful to see their parents suffer dementia, grandparent or family member slowly deteriorating. Husband s or wives may be upset or worried about living the rest of their lives without their partner. Family member may spend their time due to the increasing demands of care for the person living with dementia. Leaving work and taking an extended break may cause financial struggle. The loss of income causes the poor quality of life and it comes as a stress. Paying for home alterations, transport to places and medical supports are the extra costs. However, some people feel pleased of their new abilities if they are competent for their roles. They improve the relationship with the person with dementia while supporting. Thus, caring for the person living dementia may tie up the whole family members together. Also they share the responsibility within the family so they become more close.
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The way in which the individual, family/Whanau, and carers interact and respond to evolving stressors
Essentially, we need to understand how dementia affects people. When the person living with dementia show challenging behaviors, group of carers are not going to be panic and know how to deal with it. Knowledge and skills are the most important one when take care of dementia people. Knowing what works for each of the people being able to interact with them in their preferred way is a skill that is developed overtime in dementia care. This helps the carer to understand the process that the person is going through. Having a break, attending relaxation group or meditation, practice positive thinking everyday and get support from friends or other workers are all helpful and releasing stress for the workers and family. These rests bring them to have their own time for interest and make their stressful life be peaceful.
5. The way in which the Code of Right is applied to people with dementia
The right to complaint
Person with dementia have the right to make a complaint if they are unhappy with a heath or disability service they received. If they are not satisfied with how they complaint was handled by the provider, or do not feel comfortable making a complaint to them, talk to their nearest health and disability advocate.
The right to support
Person with dementia has the right to assistance in obtaining; financial support, housing, recreation, employment supports, social support, and community supports in keeping with their needs and wishes
The right to dignity and independence
People with dementia have the right to have services provided in a manner that respects the dignity, independence and self-determination of the individual. They have the right to contact with clergy or other spiritual advisors of her/his choice, and to exercise religious and spiritual observances, rituals, customs, and dress.
6. The needs (support and other) which I have identified for the people with dementia
The Disability allowance is a weekly payment for people who have regular, ongoing costs because of a disability, medical condition or illness. It can help for things like regular visits to the doctor, prescriptions or some travel costs.
Social Workers provider counseling, support for grief and loss, adjustment to change, relationships, problem solving and decision making.
Community Day Services
Community day services help disabled adults who can’t find work to take part in their community and improve their personal skills by providing access to regular meaningful social contact and stimulating activities.
The services will include a range of activities depending on the provider, and what you’re interested in and able to do. Activities may include:
daily living skills
education and learning activities
recreation and leisure activities.
People with dementia can go to day services as well as getting other Ministry-funded support services.
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