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What It’s Like To Live With Autism

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How To Help Your Typically Developing Child

What Is It Like to Live With Autism?

Whatever your circumstances, and whatever the abilities and challenges of your autistic child, it’s important to keep your typically developing child’s needs in mind. That said, however, it’s also important to remember that disability in the family is not always a bad thing. Given the right circumstances, a child with an autistic sibling can gain great personal strengths. Empathy, responsibility, flexibility, resourcefulness, and kindness can all come from the experience.

Here are some tips for ensuring that your typical child has a positive outcome:

  • Treat autism as a part of lifesomething to understand and respond to, rather than something to avoid mentioning or thinking about. Teach all of your children about what autism is, and what it isn’t.
  • Treat all of your children with respect, and model respect for your autistic child.
  • Be aware that your typically developing child needs your attention and love, and grab any moments you can to listen, share, have fun, problem solve, or just hang out.
  • Know that your typically developing child is coping with some unusual demands, and recognize the challenges they face and overcome.
  • Carve out special “just us” times for your typically developing child. You may need to trade off with your spouse, but that can be even better.
  • Listen to your typically developing child, and watch for any signs of anxiety, depression, or risky behavior.
  • How Is Autism Spectrum Disorder Treated

    There is no cure for autism, but treatment can make a big difference. The sooner treatment starts, the better. With therapy, people with autism learn language, improve in school, and build social skills. Many kids with ASD are in special education classes or get special education services.

    A treatment program might include:

    • speech therapy to help with talking and language skills
    • occupational therapy to help with everyday tasks, like dressing and playing
    • behavioral therapy to help improve behavior
    • social skills training to help with relating to others
    • special education to help learning
    • medicine to help with things like sleep, paying attention, and hyperactivity

    What Is The Outlook For People With Autism Spectrum Disorder

    In many cases, the symptoms of ASD become less pronounced as a child gets older. Parents of children with ASD may need to be flexible and ready to adjust treatment as needed for their child.

    People with ASD may go on to live typical lives, but there is often need for continued services and support as they age. The needs depend on the severity of the symptoms. For most, it’s a lifelong condition that may require ongoing supports.

    A note from Cleveland Clinic

    Through research, there has been much that has been learned about autism spectrum disorder over the past 20 years. There is ongoing active research on the causes of ASD, early detection and diagnosis, prevention and treatments.

    Last reviewed by a Cleveland Clinic medical professional on 12/29/2020.

    References

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    Varied Availability Of Services

    Adults with autism are entitled to nothing but are likely to receive at least some level of support. If you live in some states, you’ll have little trouble accessing services and funding for adults with autism.

    If you live in other states, you’re out of luck. According to Centers for Medicare & Medicaid Services , thes states offer the least generous programs and services:

    • Idaho
    • Colorado
    • Vermont

    Of course, the definition of “services and funding” varies depending upon need. For example, Medicaid doesn’t provide vocational training or supportservices that would be particularly useful to higher functioning adults.

    Medicaid may or may not be a source of funding for housing, day programs, and other services.

    One excellent, updated source of information about state-by-state offerings is Easter Seals. While they do focus quite a bit on children, they also include a wide range of detailed information about resources and services for all ages.

    Planning Starts At 14

    Imagine What Its Like To Live With Autism  this video ...

    Senator says parents often begin panicking when their kids hit 14 and transition planning starts coming up. IDEA requires every state to begin this process for all students with an Individualized Education Program by age 16, and some states require that school districts start the process as early as 14. During the annual IEP meeting, the focus shifts to more specific planning and goal-setting for the transition into young adulthood. Goals might include things like post-secondary education, vocational training, and independent living. Autism Speaks also provides a Transition Tool Kit, which offers guidance on everything from housing to Internet safety.

    When it came to Nat, Senator created a shared living arrangement. Its like a group home, except that theres a live-in caregiver, which Nat qualifies for due to his level of disability, as opposed to rotating staff. The idea is that its just like home, Senator says. Hes got to do the groceries, clean and do the laundry, assisted by another part-time caregiver. Nat shares a house not far from his family with another young man with similar issues; that mans family owns the house and Nat rents from them.

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    Celebrate All Of Your Childs Achievements

    I wish I had known that unlike other parents we cant take even the smallest achievement or milestone for granted. When our son started wearing his coat without a fight and expressed that he was cold, when he was able to participate in circle time during music class and when he got up on stage with the other kids at his school show we celebrated.

    Steven Grossman, Los Angeles

    Causes And Risk Factors Of Autism

    The medical community has yet to definitively explain why autism develops in some individuals and not in others. But there are several risk factors, both genetic and environmental, that have been found to be associated with the disorder, Veenstra-Vanderweele says.

    There are other potential risk factors. Prenatal exposure to some medications, premature birth, low birth weight, as well as the age of an individual’s parents, may raise the odds. But a lot more research needs to be done to better understand those connections, Veenstra-Vanderweele says.

    not;no

    Parents and pediatricians need to work together to communicate to everyone the fact that vaccinations do not cause autism, Veenstra-Vanderweele says. Not vaccinating children puts those children at higher risk for diseases and increases the risk of those diseases spreading to others.

    Translational PsychiatryJAMA Network Open

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    Families Struggle To Find Or Invent Good Supported Living Options

    Beth Arky

    When Susan Senators son Max was racing toward the high school finish line, he joined the rest of his classmates for the usual rites of passage. He took the ACT and applied to good schools, landing at New York Universitys prestigious Tisch School of the Arts.

    But things couldnt have been more different for Maxs brother, Nat. Senator, a blogger, memoir writer and novelist, had to take into account the fact that her profoundly autistic older son, while very competent when it comes to self-help skills like showering and dressing, is also limited verbally, cannot handle money and still doesnt look both ways when crossing the street.

    In other words, she knew he needed a 24-hour caregiver to be safe. But because the infrastructure and services arent in place to create the type of living arrangement she wanted for Nat after he came of age, she joined the growing ranks of parents who are struggling to make short- and long-term provisions, often taking matters into their own hands.

    What Is Autism Spectrum Disorder Previously Called Autism And Pervasive Developmental Disorders

    How Autism Feels, From the Inside | Op-Docs

    Autism spectrum disorder is a neurodevelopmental disorder characterized by the following:

    • Difficulties in social communication differences, including verbal and nonverbal communication.
    • Deficits in social interactions.
    • Restricted, repetitive patterns of behavior, interests or activities and sensory problems

    Many of those with ASD can have delayed or absence of language development, intellectual disabilities, poor motor coordination and attention weaknesses.

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    Unique Advantages Of Living With Asd

    My gift of Asperger disorder gives me the ability to have what I call my laser focus. Its the ability to stay focused on a project for extreme periods of time with total focus and concentration. For example, once while in the emergency room for a broken wrist, the anesthesiologist who came to give me sedation started talking to me as we waited. He asked what I was studying in college, to which I replied nursing. He suggested I become a certified registered nurse anesthetist. My laser focus took over, and a year later after receiving my Bachelor of Science in Nursing, I was accepted at Columbia University in their Masters degree program for Nurse Anesthesia. I graduated, passed my Board exam, and have been working full time ever since!

    People with ASD are also well-noted for having special interests. Ive had several special interests that have taken me to very lofty heights. The most spectacular one is getting a flight in an F-15 fighter jet. I saw the movie Top Gun for the first time in 1995, and by the end of the movie I decided I wanted a flight in a fighter jet. I spent the next 7 years working my way to becoming an internationally published military aviation photojournalist. On December 2, 2006, my dream was realized. I received a flight in an F-15 Strike Eagle! It was the most thrilling moment of my life!

    Links with this icon indicate that you are leaving the CDC website.

    Community And Recreation Activities

    Adults with autism can be active participants in all areas of community life including social and recreational activities. Easterseals programs may include weekends away, evenings out and other opportunities to participate in recreational activities throughout the year. With more than 100 camping, recreation and respite programs, Easterseals offers thousands of individuals with autism the chance to develop lasting friendships and learn what they can do, regardless of their age. Participants enjoy adventures and conquer new physical challenges, and some camps also offer sessions exclusively for campers living with autism.

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    You Become Very Fixated On One Thing

    People with autism often become fixated on one thing, and in that moment, nothing else mattersit’s the most important thing in their life. “It could be how the towels are foldedone of my big onesor how the pencils are aligned, or putting all the little cars in a row, or only eating the vowels out of the Alphabits cereal,” says;Swain.

    Fifteen Tips For Your Family

    What

    As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members:

    5 Tips for Parents

    5 Tips for Brothers & Sisters

    5 Tips for Grandparents and Extended Family

    Family members have a lot to offer. Each family member is able to offer the things they have learned to do best over time. Ask how you can be helpful to your family.

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    Communication Is Like Mixing Paint

    Communication is really hard. Its hard for two reasons.

    First.I say a sentence, and someone else hears the sentence but randomly inserts words into it. What I meant to say were the exact words I said, but they decided to hear some additional or different words. Ive already expended all of my energy into the first attempt. I dont have the energy for another attempt, so Im going to have to just go with whatever they heard.

    Second, and more common, thoughts arent words, but words are the only tool I have with which to express them. A thought needs to change into something else in order for anyone else to understand it. I cant just lift the thought and give it to someone, I have to change it until it fits into a format someone else will understand. Having done that, I am no longer expressing what I wanted to. It reminds me of paint. If I want a specific shade of green, I have to take the blue and the yellow and mix them together. I have to keep adding bits of blue and bits of green until I have the shade I wantonly now Ive mixed so much paint that I dont know what to do with it all. I just wanted a bit of green. Now I have four different shades and a mess, and Ive wasted all that paint. Thats what turning thought into words is like. Its messy and wasteful and always results in an insane, unnecessary amount of words. Yeeshas_Island

    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 employees.

    Some corporations have started to recognize the value of actively recruiting and hiring autistic individuals; a few include:

    • Freddie Mac
    • SAP

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    There Will Be Tantrums

    This was especially true when my brother was young: The tantrums usually came out of a misunderstanding or a breakdown in communicationa common issue for people on the autism spectrum. They cannot always communicate what they are feeling, and the frustration can lead to tantrums. But as we got better at communicating as a family, the tantrums lessened until, eventually, they stopped completely.

    Variability In Adults With Autism

    What it’s like to walk down a street when you have autism or an ASD

    Not all adults with autism are alike.

    • Some adults with autism have successful careers in demanding fields such as information technology, robotics, and video game production.
    • Some work part-time while also taking advantage of day programs and resources.
    • Some are unable to function in the workplace and spend their days in sheltered settings.
    • Some adults on the spectrum are happily married or partnered.
    • Others have romantic friendships.
    • A significant number are unable to form meaningful, reciprocal relationships with peers.

    These vast differences make it just as tough to define or provide services for adults with autism as for children on the spectrum.

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    People With Autism Dont Live In A Bubble; Their Lives Are Rich And Colourful

    For Maria Helexova, autism is her life story, her work and her mission. She is a mother of 17-years old boy with Autism spectrum disorder and she works as a head of SPOSA BB, an organization in Slovakia that helps children with ASD and their parents. Hospital clowns are regularly invited to events organized by SPOSA BB.

    • You devoted your professional career to helping people with ASD as a head of organization SPOSA BB. It seems that parents of children with disabilities often establish these kind of organizations.

    It is true. Being a parent of a child with ASD is difficult regarding time, mental health and especially acceptance. You need to learn to accept ASD as a part of your life, a part that you somehow cant let go. Fighting wont help. If you accept it, the path is not easy, but its easier.

    • There is a common opinion that people with ASD are isolated in their own world. What is your experience?
    • How are children with ASD affected by Covid-19 pandemic?

    They are facing a deep isolation. Before these children used to go to events, be in contact with others. Now they lack this contact they no longer meet in schools or in organisations such as ours. Now children work on their computers and tablets. People with ASD tend to get easily irritated by too many people, many stimuluses, smells, sounds, touch. Once they get used to the virtual reality or sterile environments of their homes, it will be harder for them to come back.

    Bluntness Can Be Misinterpreted As Being Rude

    Sometimes those with autism are mistaken for being rude, just because of how brutally honest and blunt they are. Even though they’re just saying what they’re thinking or feeling, the directive nature of their communiques can be interpreted as insensitive and possibly offensive, even if that’s not at all what they meant to do.;

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    No I Dont Just Need To Discipline My Child More

    Meltdowns are not tantrums. They are not the result of a lack of discipline on the part of the parent. Children on the Autism Spectrum have sensory issues. One child may be a sensory avoider, while another is a sensory seeker. And kids with sensory issues do not respond well to physical punishment. Spanking, time out, and yelling are not usually effective tools of discipline for a child with autism. Rather, parents of children on the Autism Spectrum rely on routine and repeated exposure to teach their autistic children rules and boundaries.

    Keys To Understanding Autism Symptoms

    10

    According to experts, the first key to understanding autism is to recognize that it profoundly alters how a person perceives the world.

    âYou could think of a person with autism as having an imbalanced set of senses,â says Shore, who is an assistant professor in the School of Education at Adelphi University in Garden City, N.Y. âSome senses may be turned up too high and some turned down too low. As a result, the data that comes in tends to be distorted, and itâs very hard to perceive a personâs environment accurately.â

    People who donât have autism — sometimes called âneurotypicalsâ — are naturally good at filtering out what doesnât matter. Their senses work in unison to focus on whatâs relevant. âWhen an average person walks into a roomful of people, he notices who they are and what they are doing, and figures out how he fits in,â says Geraldine Dawson, PhD, chief science officer for the education and advocacy group Autism Speaks.

    âBut when a person with autism walks into the room, he notices things that arenât as relevant â the sound coming from outside the window, a pattern in the carpet, a flickering light bulb,â Dawson tells WebMD. âHeâs missing out on the relevant details that would help him understand the situation. So for him, the world is a lot more confusing.â

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