We Dont Need Autism Awareness We Need Autism Acceptance
Youve probably seen the bumper stickers, Facebook posts and the t-shirts calling for Autism Awareness. But as parents of children on the Autism Spectrum continually insist, our society is aware of autism. Its autism acceptance that we need. Though one in 68 American children are now diagnosed with autism, our society still treats autistic individuals and their families as social pariahs. To become a more inclusive society will take advancements in access to services, affordable health care, employment opportunities, Medicaid expansion, fair pay, and more opportunities for quality education.
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Parenting Tips For Overwhelmed Autism Moms
1. Stop feeling guilty. As previously mentioned, motherhood is overwhelming. Period. And as much as were taught to put ourselves on the backburner so we can take care of our loved ones, we must remember that an imbalance in our emotional health can lead to physical issues such as chest pains, ulcers, and high blood sugar, as well as emotional issues like stress and depression. Our emotional health impacts how we feel about ourselves. It also enhances the quality of our relationships, and effects how we deal with our feelings and handle difficulties. So the next time you feel guilty for wanting a little time to yourself so you can catch your breath, I urge you to let those feelings go and give yourself a little grace.
3. Identify your ONE thing. One of the most powerful books I read last year was The ONE Thing: The Surprisingly Simple Truth Behind Extraordinary Results by Gary Keller. In the book, Gary introduces the idea that behind every successful person is their ONE Thing the thing that stands between them and their goal. He asks, whats the ONE Thing you can do this week such that by doing it everything else would be easier or unnecessary?, and then compellingly demonstrates that extraordinary results are a result of how narrow our focus is.
Judy Blume once said, My only advice: stay aware, listen carefully, and yell for help if you need it.
So, whats it going to be?
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Planned Parental Interaction Enhances Outcomes
Experts believe that parent-mediated intervention during the preschool years can enhance life skills of children with autism, improving their life chances.
Areas where the child could benefit might include parent-child interaction, social communication, symbolic play, and social imitation. The intervention could lead to better adaptive functioning, which is the ability to cope with daily tasks, less restricted behavior, fewer repetitive behaviors, and reduced anxiety in the child. This would also benefit the parents.
Medical News Today recently reported on a study highlighting the benefits of early intervention.
Children whose parents participated in a special early intervention strategy when the child was between 2-4 years old had less severe signs of autism by the ages of 7-11 years.
The strategy included 20-30 minutes of planned communication and play every day, and the chance for parents to get specialist feedback on their interaction with their child.
One challenge that parents face is how to react when their child behaves unusually in public.
The website Parent Coaching for Autism offer some strategies that can minimize this.
At home, they propose:
When out and about, they suggest carrying a stock of stress relievers or a favorite toy, to distract the child and divert their attention if necessary.
The parents wished people would:
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You Cant Always See Autism
There is still a shocking amount of ignorance among the general population when it comes to the Autism Spectrum. Many people assume that children with autism have certain identifiable facial features or particular habits. But as it has already has been mentioned, every single person with autism is different and mild cases of autism are common. These stereotypes and lack of understanding often make things difficult for parents. Its especially hard in the case of schools, coaches, or other organizations who deny a diagnosis because it is not easily seen.
Medications And Side Effects
Medications for children with epilepsy are important. Monitoring your childs use of his/her medication is equally important. Patients often feel so much better after taking epilepsy medication that they may be tempted to stop. This could be a risk for future seizures and parents should therefore help their child take medicine as prescribed.
As a parent, you need to work with your child and explain that the reason he/she feels well is because he/she is taking their medication as prescribed.
Parents also need to be educated about the possible side effects of various medications their child with autism may be taking to manage their epilepsy.
Parents should monitor their children carefully to see if there are changes in their overall appetite, sleep patterns, and weight loss or gain. Such information needs to be shared with your childs teacher as well as your pediatrician.
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Prioritize Independence And Communication
After baseline medical needs are met and you figure out how to deal with the everyday, I recommend that parents pay particular attention to the areas of communication, self-help and socially appropriate skills. A child who has a high academic ability, but poor communication skills, hygiene or a proclivity to hurt others will greatly limit their opportunities.
Nicole Sugrue, Port Washington, New York
Parent Training Characterizing The Label
An initial way to distinguish parent training programs is to take note of whether the program is designed to provide parental support and promote knowledge gains around the childs ASD diagnosis versus a program that is designed to actively engage the parent in promoting skill acquisition or behavior change in the child. proposes two broad categories to reflect these differences in programs that invoke the label parent training: Parent Support and Parent Mediated-Intervention . This initial classification schema is then broadened to include programs within four main categories: Care Coordination, Psychoeducation, Parent-Mediated Interventions for Core Symptoms, and Parent-Mediated Interventions for Maladaptive Behaviors, which will be further described below. Each of the interventions shown in has a tradition and a history. Moreover, these interventions have varying levels of research support from case reports, through rigorous single-subject design and, rarely, randomized controlled trials with structured interventions.
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Tips For Coping With Stress
Start with simple changesIf you have a child with autism and feel overwhelmed by all of these categories of stress, sometimes starting with the simple changes can make the biggest difference in your overall functioning. This could look like making sure you get enough sleep at night, exercise regularly, and schedule some time for yourself. If these tasks seem unmanageable, you can focus on even smaller changes such as slowing down through your daily routine, drinking more water, or asking for help with simpler tasks. You might be surprised how much of your stress level is within your control, and you may find that caring for yourself has an immediate positive impact on your childs functioning as well.
Focus on reality and not the what ifsIts easy for any parent to become anxiously focused on how their child is developing, but parents of children with autism are at particular risk for excessively worrying about their children and what challenges they may face in the future. If youre feeling stressed, ask yourself whether youre focused on the reality-based needs of your child or the future What ifs. Asking, What is my responsibility to my child today and to myself? can help you direct your focus back to what you can actually control.
If youre a caregiver of a child with autism whod like to reduce your overall level of stress, you can start by asking yourself the following questions:
Help For Parents Of Children With Autism
If you have a child with autism, it is important to get support. The day-to-day care of children with autism can be stressful. Making sure your child get the help they need can also pose a challenge, depending on whether quality support services are available in your area. At the same time, you are likely to have ongoing worries about your child’s prognosis and long-term well being. For all these reasons, you need to take care of yourself, as well as your child. Make an effort to reach out and find the support you need.
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How Can I Help Teach My Child Social Skills
Every parent wants their children to form relationships that make them happy. Children with autism approach social situations with anxiety and frustration, but parents can help kids gain confidence, especially those on the high-functioning end of the spectrum.
Parents can model and explain social behavior to their child. After a particular interaction, they can provide a detailed, step-by-step explanation for their behavior, including their facial expression, tone of voice, and body language. Explanations and instructions that target the why of the behavior can be helpful since that understanding doesnt come naturally to those with autism.
Parents can discuss social situations the child sees on TV or ones theyre likely to encounter at school. The parent and child should take turns role-playing, so that the child practices playing both individuals in the scenario.
Scheduling play dates with kids in a support group can allow children to practice social skills while providing parents an opportunity to discuss strategies with other parents.
How Much Does It Cost To Raise A Child With Autism
Raising a child with autism costs around $60,000 each year, according to the advocacy group Autism Speaks. Costs may be higher if the childs autism is more severe.
Finances are devoted to obtaining therapies, education, caregiver time, and health care. Parents may also face financial strain because a partner may decide to leave work to care for the child full time.
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How Is Autism Diagnosed
The diversity of autism spectrum disorder can make it difficult to correctly diagnose. Sometimes children with ASD are mistakenly diagnosed with a different disorder, like attention-deficit hyperactivity disorder or oppositional defiant disorder , or they are told that nothing is wrong. Other times kids are diagnosed with autism when they actually arent on the spectrum.
First Steps: There are a variety of screeners that pediatricians or other practitioners might employ as a first step to learning if a child might have autism, before beginning a formal evaluation. Some are questionnaires that parents fill out and others are assessments done by clinicians.
If a screener indicates that a child may have autism spectrum disorder, the child should receive a comprehensive evaluation with someone trained in diagnosing autism. This evaluation should include assessment of a childs behaviors in different settings and within the context of their overall development, and it should incorporate both clinician observation and parent/caregiver interviews. Evaluations will often include autism-symptom specific measures such as:
Evaluations should also include information about other areas of a childs functioning across contexts. Assessing a childs cognitive, motor, language and adaptive functioning can provide information on the most appropriate treatments and the impact their symptoms are having on their overall functioning. This includes using measures like:
Pay As Much Attention To Your Other Children As You Do Your Special Needs Child
This might seem strange to mention. We know you love all your kids equally. But special needs are exactly that. By their very nature, children with have a diagnosis will have extra needs, drawing added attention from both parents. To ensure all family members feel secure and loved, it is important to plan independent outings or moments with your other kids. Giving them your entire focus and full attention will help keep your home harmonious and siblings less resentful.
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Expert Advice And Steps Can You Take Today To Help Reduce The Stress Of Caring For A Child With Autism Learn More
A day in the life of a caregiver of a child with autism spectrum disorder can include any number of challenges and stressors. A caregiver might be driving their child to various appointments, advocating for the childs educational needs, helping their child avoid sensory overload, or dealing with an unexpected tantrum in public. At the end of this long day, they may even be discouraged to find that their child is unable to sleep, keeping the caregiver from getting the rest they need.
Though parents of children with autism face many unique challenges, they are not necessarily doomed to a life of stress. Research has shown that caregivers who engage their support systems and actively solve problems experience much less stress than those who disengage or cope in unhealthy ways. Its no secret that a less-stressed caregiver is much more likely to raise a well-adjusted and less anxious child.
What To Do If Youre Worried
If your child is developmentally delayed, or if youve observed other red flags for autism, schedule an appointment with your pediatrician right away. In fact, its a good idea to have your child screened by a doctor even if he or she is hitting the developmental milestones on schedule. The American Academy of Pediatrics recommends that all children receive routine developmental screenings, as well as specific screenings for autism at 9, 18, and 30 months of age.
Schedule an autism screening. A number of specialized screening tools have been developed to identify children at risk for autism. Most of these screening tools are quick and straightforward, consisting of yes-or-no questions or a checklist of symptoms. Your pediatrician should also get your feedback regarding your childs behavior.
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This Is A Great Time To Parent A Child With Autism
“I am grateful that we live in the times that we do. So much new information has been discovered about autism. We live in the age of the internet and I can connect with another autism mom who lives several states or even countries over and talk about our shared experiences. I am grateful to have things like iPads that not only help my son communicate but also gives us a chance to share a moment while watching one of his favorite YouTube clips. A tip of my cap to the families that went before us. They really helped pave the way for the benefits my son has now. I hope I can do the same for the ones coming behind us.”
Eileen Shaklee, Wall, New Jersey
Medical Causes For Autism
Its not unusual for medical problems to be overlooked in kids with autism, especially those who are nonverbal. When evaluating your childs behaviors, its crucial to consider that some may actually be reactions to pain or discomfort from treatable medical or dental conditions that may have gone unrecognized. Kids with ASD may not be able identify or articulate the source of the pain or discomfort they are experiencing effectively.
Here are some commonly misinterpreted behaviors that may have medical causes:
- Gulping or grimacing
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Stress And The Autism Parent
Most parents experience stress, but for those raising children with autism, everyday life often brings Stress with a capital S. They need to keep their child from running away, manage meltdowns, wrangle with teachers about special education needs, avoid sights or sounds that overload his senses, and drive to therapists or doctors. And that’s just what Monday looks like. They do all this while sleep-deprived. Many children with autism simply don’t sleep well,1 so neither do mom and dad.
And those stresses don’t necessarily end on a child’s 18th or 21st birthday. Just ask Marilyn Cox of Missouri. “I can’t say the stress is any less now than it was when my son was 3 years old,” she sighs. That was four decades ago. Her son is 47, works, and lives at home.
Researchers have taken notice. More than a few studies report that parents of children with autism experience more stress than parents of typical-developing children,2-4 and parents of children with Down Syndrome.3,5
Simply put, too much stress is bad for parents’ health. One research article summed it up: “Chronic stressors can wear down the body, particularly the cardiovascular, immune, and gastrointestinal systems.”2 Highly-stressed parents also experience more mental health problems, including depression6,7 and anxiety.8
Practical Tips To Raising A Child With Autism
Finding out our son had autism was a major blow to the idealistic picture we held of what parenting might be like. Parenting, in general, is far from easy, but parenting a child with autism can be particularly demanding. In my last blog, I shared our journey about what extreme parenting sometimes feels like, and if youre also a parent of a child with autism spectrum disorder , I want you to know youre not alone. Even as an equipped mental health therapist, receiving that diagnosis was life-changing. Here are a few strategies that are helping our family to cope:
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Autism Discipline: What You Should Not Be Doing
Before I teach you how to discipline a child with autism, lets talk about what not to do. First, children with autism often have language and cognitive delays, making them incapable of understanding the language of even simple rules such as, we keep our hands to ourselves, or we need to be quiet now. A six-year-old might have the language ability of a two-year-old, and that child cannot be expected to know how to stand in line, keep an appropriate distance from other kids, and wait for his classmates to be ready. All children need to be taught based on their abilities, strengths, and needs, not their actual chronological age. Reprimanding or punishing a child for not following classroom rules when he doesnt have the ability to comprehend these rules is just inappropriate.
Secondly, many parents and teachers of kids with and without disabilities dont know how to discipline without threats and punishment. We were never taught this in college or even high school. Even if you took a course in college on classroom management, this classroom management course was not an intense focus on ABA, Applied Behavior Analysis, which is the science of changing socially significant behavior.
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