Giving Yourself Permission To Take A Break
It can be hard as a parent or caregiver to justify taking a break from your child or loved one with autism. You may feel that you should be there for your loved one and that no one else can do it like you can. While this is true on one level, taking a break is important and necessary for your own mental health so that you can be at your best for your child or loved one’s sake, as well as the rest of your family. One study even showed that parents had less stress and better quality marriages with every hour of respite care they used.
Occasionally having someone else take care of your child or loved one also helps them develop stronger relationships with other people, an important part of life. So go ahead and plan that afternoon, evening, or week away and know that you’re actually doing something good for everyone involved.
Inclusion Criteria And Patient Samples
Data on the consequences of depression or schizophrenia on caregivers originate from the research done by van Wijngaarden et al. . The depression sample consisted of relatives, friends, partners or other caregivers of patients who suffered from depression . The patients were all treated in a mental hospital specialized in the treatment of depression in the Netherlands. Patients were asked for written permission to contact a SO and to send them a questionnaire by mail. From this data we used the outpatient data only , to match our population.
The schizophrenia sample originated from the European EPSILON study , which identified a representative cohort of patients with schizophrenia. From this sample we used the outpatient data from the Northern European countries: the Netherlands, Denmark and the United Kingdom . For more details see van Wijngaarden et al. .
The ASD data were collected at the outpatient clinic of the Radboud University Medical Center in Nijmegen, the Netherlands. This clinic has a special outpatient program for adults suffering from developmental disorders D).
Patients who have been diagnosed with ASD were offered to participate in a psycho-educational group course. In this course information about ASD was given, and the impact of different aspects of ASD on an individualâs life was explored.
How Do I Make Sure The Provider Is Right For My Family
When Youre Ready to Interview: Important Information You Need to Know about Your Respite Worker by Autism Speaks staff member and autism mom Marianne Sullivan
Below are 10 items you will want to discuss with a potential respite worker. Keep in mind when youre interviewing that the most important step is to observe how the respite worker interacts with the individual with autism and your family. If possible, have the worker spend supervised time with your family member. See how the respite work interacts with your family member with autism, and with other members of your family. Make sure that you feel completely comfortable with the situation. Its true that it can take a few weeks for respite workers and family members to get to know each other, but dont let an uncomfortable situation go on and on thinking it will eventually work itself out. We cannot expect every worker to be a match for your family. Sometimes, despite all of your efforts, the worker is not a match. Its best to move on and find a new respite worker who can provide you with the support you need.
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Tips For Taking Care Of Yourself
Autism touches so many parts of life. As a caregiver, it can be difficult to balance your needs with all the demands on your time.
But it’s important to take care of yourself. By finding the support and resources you need, you’ll ultimately be doing the best thing for your family and yourself.
Here are some ways to do that:
What Can Be Done To Help Parents Of Autistic Adults
The picture you probably have in your mind of autism is that of a child. But autism is almost always if not always a condition that lasts for life. We are the parents of a 22-year-old young man with autism. He barely recognizes our presence, but clearly knows us better than most other people. He cannot speak, but he can read and type to communicate on an app for his iPhone. He cannot use a spoon or button his clothes, but can find Barney videos on YouTube. He is completely unaware that cars are dangerous and cannot cross a street without assistance. He is a representative of the many with autism who are not well known to the media, or to society not the verbal, gifted, and in some ways sympathetic Rain Man, but the ones with very little social awareness, scattered skills and often challenging behaviors. He is also an example of the obstacles faced as children with autism grow into adulthood. After age 21, his schooling ended. But his needs didnt change. He has always needed 24/7 care, and he always will.
Dr. Barry Gordon. Photo courtesy of the Gordon family.
But lets not pretend: all of these needs are so much harder to provide for individuals with autism. And, many, if not most such individuals, will not be able to earn enough to provide for their needs themselves, at least in our present system.
Left: Renée Gordon and her son, Alex, 22, who has autism. Photo courtesy of the Gordon family
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Guide To Caregiver: How To Deal With Adults With Autism
It is important to recognize that people with autism spectrum disorders have characteristics that make life even more challenging for them. In order to help ensure they are receiving the best possible treatment, it is important to understand how to work with them. Individuals on the autism spectrum need extra empathy and patience from those around them. Here is a list of tips on dealing with others on the autism spectrum.
What To Do As A Caregiver
Because autistic people can struggle with communication, forming relationships, and overstimulation, they may require support from their loved ones. Many autistic people experience trauma symptoms as a result of the stress of existing in a world designed for neurotypical people, which may manifest as self-medication and substance use.
Additionally, many autistic people experience medical problems, particularly gastrointestinal issues, that may require treatment.
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What Was The Inspiration Behind The Development Of The Caregiver Skills Training Program
In our international work, it started from what we heard from parents and other caregivers in the countries we visited. Many of these parents went to great lengths and expense to get their children evaluated. But a diagnosis of autism didnt necessarily lead to services or even information about the condition. For instance, on a trip to Albania, I heard from parents, teachers and healthcare professionals about how they didnt know what to do to help a child diagnosed with autism. We dont have the skills. We dont have support, they told me. Weve heard these concerns in many parts of the world. Professional behavioral therapy isnt available to all or even most families in many countries.
In that kind of setting, Caregiver Skills Training is an intervention that parents and other caregivers can use to help their children when professional services are lacking. The strategies give parents skills that improve how they interact with their children and deal with challenging behaviors. The goal is for the parents to help foster their childrens communication and, when possible, their language skills. The emphasis is on skills that the parents and their children can use daily as they participate in activities at home, school and play.
One of the most important aspects of our pilot testing is to gauge how feasible it is to adapt this program to different communities and cultures around the world including here at home.
Autism Caregiver Training: Helping Families
Autism Speaks answers your questions about a program thats empowering parents and improving lives in underserved communities in the U.S. and around the world
The World Health Organization Caregivers Skills Training developed in collaboration with Autism Speaks is a practical and culturally adaptable training program to foster the social and communication skills of children with autism and other developmental issues, with a special focus on families in underserved communities.
The program aligns with Autism Speaks mission to increase understanding and acceptance of autism, increase early-childhood screening and intervention and ensure access to reliable information and service throughout life.
The program trains Master Trainers and Facilitators, who in turn train parents and other caregivers to use scientifically proven strategies for promoting child development, reducing disruptive behaviors and strengthening their own coping skills.
Last year, Autism Speaks and WHO began the global rollout of Parent Skills Training with Master Trainer workshops and pilot programs in the Philippines, South Korea and South America. The year also brought commitments from more than 20 governments to implement the program.
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Great Strengths And Abilities
In general, people with autism are honest and dependable most are focused on their work and are rarely distracted by social activities or outside interests.
Quite a few have exceptional talents in areas such as computer coding, mathematics, music, drafting, organizing, and visual arts. While it can be tough for autistic adults to set up and manage their own space and schedules, many are outstanding bosses and employees.
Some corporations have started to recognize the value of actively recruiting and hiring autistic individuals a few include:
- Freddie Mac
- SAP
Identify Their Specific Individualized Needs
Caregivers can support autistic people by helping them identify their sensory, dietary, and emotional needs and find resources to meet these needs appropriately. The needs, goals, and desires of the autistic person should be given top priority when determining what services are the best fit.
For caregivers of young children who might not be developmentally able to articulate a preference, listening to the autistic community is essential in determining appropriate care.
Ways that you can identify an autistic person’s specific needs include:
- Many autistic people struggle with verbal communication. Encourage other methods of communication and use these alternatives to ask their preferences.
- Notice what is usually happening right before a meltdown to identify sensory triggers, and help them avoid those situations.
- When the autistic person indicates that they are becoming overstimulated, listen to them. Often, autistic individuals will indicate that they need a break or need additional support, and the meltdown occurs when this communication is not met with appropriate support.
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Policy Resources For Long Term Services & Supports Advocacy:
- CCD Principles
- Home and Community-Based Services: a comprehensive data tool that examines how well programs in all 50 states and the District of Columbia are serving residents with intellectual and developmental disabilities.
- Allies for Independence: a unique national advocacy organization dedicated to the implementation of a strong, vital, and accessible long-term services and supports system.
What Is Respite Care
Respite care is short-term care for a child or adult that allows the primary caregiver relief.
According to National Institute of Health, the respite care definition is short-term relief for primarycaregivers. It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.
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An Autistic Adults View Of The World
One of the first things that caregivers for autistic adults should understand is that their loved ones see the world through a different set of eyes. Their senses are typically off balance so, some senses are hyperactive, and other symptoms appear to be dormant. As a result, the brain receives distorted information.
Although a person with autism may be able to make distinctions in a room full of people, the person may also notice things in the room that are not relevant. For example, an autistic adult may notice a light flickering in the background or the carpet pattern.
Only Use Reliable Sources To Gather Information
Parents should also be mindful of the resources that they utilize. The Aspergers / Autism Network is run by community members and includes information for loved ones of autistic individuals. The Autistic Women & Nonbinary Network is another organization run by the autistic community with free resources available.
Listening to the autistic community about best practices for care and supportive resources that are helpful rather than harmful is essential in supporting an autistic loved one.
If your biological child is autistic, you might want to get tested as well.
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The Benefits Of Respite Care For Young Adults With Autism
If you care for a loved one with autism, there are several challenges that can prove draining for many. Theres no shame in admitting you need help or a break. In fact, only your fully-rested, healthy self can do the best for the recipient of care.
Respite care for adults with special needs can offer you and other caregivers time to take care of other responsibilities, such as other family members or personal tasks, or just to regain energy and have time to yourself. Hiring a PCA for specific times of day also helps to develop a routine, which can be hugely beneficial to people with autism.
At Best Care, we are here to support you. When it comes to quality home care, regardless of the level of care needed, personal care assistants can help make life easier and provide peace of mind for family and friends.
For more information on our services, call us at 330-2550.
Day Programs For Young Adults Who Remain At Home
Easterseals offers day programs for people with autism so they can enjoy socialization and recreational opportunities and participate in the community. While people with autism who participate in Easterseals day programs might need some supervision, they need only minimal assistance with activities of daily living.
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Limitations Of This Study
The IEQ has been validated in schizophrenia and depression samples, and has been used with many different psychiatric disorders since, but it has not officially been validated yet with respect to ASD. Cronbachâs alpha was acceptable for the overall score and for 3 of the 4 sub-scales but not for the subscale Supervision. Items in this subscale, like âhow often during the past 4 weeks have you guarded your relative/friend from committing dangerous actsâ or âhave you guarded your relative/friend from taking illegal drugsâ are possibly not as applicable to HF-ASD as they are to depression or schizophrenia. These were also items that could not be included in one of the factors of the preliminary exploratory factor analysis, which showed a slightly different factor structure compared to the standard IEQ structure. Tension seems to be an issue in ASD, which confirms the results described in this article.
Even though a Confirmatory Factor Analysis was not performed due to the small sample size, it is encouraging to see that the IEQ in ASD seems to have a reasonable amount of reliability and validity. A larger sample size is needed for official validation for the IEQ in ASD. Also, more studies need to be carried out to replicate our findings.
Why Caregivers Need Respite Care
There are many situations for which, as a caregiver, you may need respite care, including:
- You need to get to the doctor for your own checkup.
- You have another child, a spouse, or a parent who needs you.
- You’re close to your breaking point and unable to do a good job of caring for your autistic loved one.
- You haven’t had alone time with yourself or a partner for far too long.
Taking care of a child with autism is stressful. Without respite care, you run the risk of losing your health, your relationships, and your sense of humor. Without those critical tools, you’ll be no help to your loved one with autism.
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What Is Respite Care For Autism
The word respite means to break or relieve. Respite care allows you to take a temporary break from the caregiving duties towards your loved one with autism.
A respite caregiver is a person who will take care of your loved one with autism for a short period so that you can take a break and focus on your health or engage in activities that you may find relaxing, entertaining and restful.
The respite care can be overnight to a few days a week. You can use respite services either occasionally or regularly.
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It can be challenging to justify taking a break for the loved one with autism. You may feel that no one else can care for your loved one like you or may feel guilty and selfish. Its true on one side but taking a break and doing something relaxing is beneficial for your mental health.
Its not at all selfish to need time for yourself. If you are exhausted caring for your loved one with autism, then your patience and compassion will grow thin. You will find it hard to connect and provide sufficient care to your loved one with autism. A break is why it is necessary to feel more energetic and focused on your caregiving role.
Additionally, respite care is an opportunity for your child or loved one with autism to have stronger relationships with other people. Again other caregivers may have new ideas to motivate or introduce new ideas that your loved one with autism will enjoy.
Make Plans With A Friend
Go out and do something you like and enjoy! Find a new restaurant, go to a sporting event, or just get together for coffee and catch up with other people.
Do you have someone who is available to cover for you and look after your child for a couple of days at a time? Plan a mini trip solo or grab some social time with a friend!
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