Autism Spectrum Disorder: What Does The Future Hold
After the diagnosis of an autism spectrum disorder, one very common question for parents is what this means for their childs future. Will they be able to live independently? Get married? Go to college? Have a job? Unfortunately, as a psychologist, we dont know the future and often have a less than satisfying answer to these important questions. However, we do know that research indicates a few predictors as good determinates of long term outcome for children with an autism spectrum disorder diagnosis.
Worries over the future are one of the most common concerns we hear for parents. Thankfully, we have a few predictors we can look toward to give us some clue about potential outcomes. Note that we say “predictors” and this is not a guarantee one way or another!
One of these predictors is the childs ability to engage in independent living skills. Children on the autism spectrum often need to be taught these skills more explicitly than other children. This is important and sometimes over looked, particularly for higher-functioning children, as professionals and parents focus on academics or other skills. However, research indicates that deficits in adaptive functioning skills are often present regardless of level of cognitive functioning. Given the importance of emphasizing daily living skill development, I think it could be helpful to review strategies for increasing independence.
Develop a PlanUse of Visual SupportsGradually Shaping BehaviorsIncreasing Generalization
How To Plan For Future Care Of Your Autistic Child
As the parent of an autistic child, you take on many roles.
You become their biggest champion, their biggest cheerleader, and sometimes you become their voice.
You will more than likely become their biggest advocate in life.
And while this prospect may seem scary, its a role that you should embrace. Preparing for your childs future and making sure that they will be provided for are scary things to think about.
I often ask myself, what will happen when Im gone? Who can I trust to take care of my autistic daughter? Is it truly fair to expect for her siblings to take on this role? Is it wrong of me to even hope that maybe
Well, there are certain things that I dont want to think about.
The future for my autistic daughter is somewhat set in stone. For the rest of her adult life, shell be with me.
But what happens beyond that? What happens when Im not here? Who will take care of my autistic child when Im gone?
Please note that I am not a lawyer, merely a mom trying to ensure my childs future to the best of my ability.
What Happens To Autistic Adults When Parents Die
Autistic children sometimes need more support than neurotypical children as they grow up. Autism can come with challenges in school, social interactions, the professional world, and daily life, not to mention the various medical issues that may occur alongside being on the spectrum.
Parents and caregivers of autistic kids know they are especially important to their childs quality of life, which may leave many wondering: What will happen to my child when I die?
This is a scary question for all parents, but especially parents of special needs children. Every family is different, so your plan will depend on your childs needs and capabilities. Beyond the logistics, you may worry about how your child will emotionally handle your passing.
In this article, well give parents and caregivers of people on the spectrum an overview of what to consider when preparing for the future and how to help your child understand death.
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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.
Effect On Parents: Worrying About The Future
Some parents worried most about what would happen to their children when they were adults. Who would take care of them? What sort of life would they have? One mother was absolutely terrified about the future and the worry was like a low form of depression that was with her all the time. Another said that every parent of a disabled child feels afraid to die, afraid of what will happen after they can no longer care for their child. I think about that every day.
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Raising Awareness & Exploring Neurodiversity
As much as virtual reality is used to create a simulation where an autistic person can practice their social skills or manage their anxiety, more people are using the technology to share their own experiences of living with autism. This works to both raise awareness of the condition and to explore the diversity of the autistic life that advocates want to celebrate.
An example of a creation by the Blue Room is a VR game called Beholder. It was developed by Matt Clark, who has a 15-year-old son with severe autism. Matt created Beholder so he could understand how his nonverbal son sees the world. He told Forbes that he didnt want to focus on the negative aspects of autism, but he wanted to better appreciate some of the fascinating aspects of the neurodivergent perception.
A similar enterprise was done in 2016 by a creative agency that produced an immersive experience for the United Kingdoms National Autistic Society, showing the effects of isolation and overstimulation an autistic child might experience at a shopping mall.
This kind of experience leads to increased understanding of autistic individuals, helping to reduce stigma associated with the disorder. When neurotypical people better understand the autistic experience, they are more likely to engage in relationships with autistic individuals.
Group Homes Create Families
Barbara Fischkin also helped create a home for her son Dan. She first shared the story of his miracle group homefunded by the U.S. Department of Housing and Urban Development and run by the Nassau County Chapter of AHRC, a nonprofit grouptwo years ago. Then, she described it as a newly renovated house on Long Islanda place I call the frat house. Actually, it is a beautiful and smartly designed home that could be a model for such endeavors nationwide. And the guys, who are in their 20s and 30s, are all at the age when leaving home and family and striking out on your owneven if you need lots of staff to helpis something one yearns to do.
Two years later, she reports that Dan, now 24, and his three housemates become more like a family all the time. The guys look out for one another. Dan is still not verbal and has an aide most of the time but is making great progress with independent typing.
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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
Challenges For The Future With Virtual Reality
The future of autism and virtual reality will likely look at how the technology can capture the nuances and dynamics of social interactions since current versions of the technology primarily rely on noninteractive tasks.
Another challenge for the future is how virtual reality can be used as a truly therapeutic or research tool for autism. In all the work that has been done thus far, the sample sizes have been quite small and there have been no control groups. While initial signs have been positive, there is not yet any indication that the VR experiments would pass clinical muster for wider applications.
Barriers include cost not just for the equipment, but for the programmers, developers, and animators who would have to create the simulations and its contents. Current virtual reality scenarios remain very simplified, with only moderate amounts of the realism necessary to fully simulate an authentic autistic experience.
Lastly, concerns still remain about making the simulation experience more about the autistic individuals and less about the neurotypical experience. As the Autism journal writes, approaches to studying autism are framed by neurotypical definitions. One developer explained that there is a tendency to use VR that is about autism and autistic groups and not with autism and autistic groups. First-person virtual reality simulations can address that, but the technical and research limitations mean that the technology is not there yet.
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Four Legs And Fur May Change Your Child’s World And Give You Hope
“We were on an endless search for that one thing that was going to make the difference for our son … and then we adopted Xena, a severely abused and neglected puppy. The moment my son and Xena met, there was an immediate and undeniable bond. He spoke freely to her he sang to her he played with her. They were inseparable. We spent years and thousands of dollars on therapy hoping to accomplish what this dog was able to attain instantly. My son finally had a relationship where there was no judgment or expectations placed on him, but there was a friendship that allowed him to let it all go, open up and be himself. I am not saying that all families living with autism should have a dog, but I will say that miracles do come true, and your miracle may be at your local shelter waiting for you.”
Linda Hickey, Johns Creek, Georgia
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
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What Will Happen To My Autistic Child When I Die
My first piece of advice would be to consult with a lawyer. They will be able to help you with planning for your childs future. You can also talk to your family members, and of course include your special needs child in the planning process.
Planning for your special needs childs future may be something that youre putting off. And I get it. I dont like to think about it either. But its a question that I must face.
How are you planning for your special needs childs future?
Dont Limit Your Child Based On Their Abilities At Diagnosis
The bottom line in this entire post is this: Who your autistic child is at 3 does not tell you who they will be at 13, or who they will be at 30.
So I want to challenge you Dont limit your child based on their abilities when theyre diagnosed.
Remember that your autistic child will continue to grow and develop in their own way after their diagnosis, just like they grew and developed before their diagnosis.
No one looks at a 6-month-old baby and thinks they cant talk, so clearly theyll never talk or thinksthey cant walk, clearly theyll never walk on their own.
Its so much better to presume competence with your autistic children.
Assume that your child will be able to do whatever they want to do. Assume that your child is capable of learning and growing and developing on their own timeline.
Then your job as their parent is all about supporting your child as much as you can in that development.
And everything becomes a whole lot easier from there, I promise!
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When It Comes To Autism One Size Doesnt Fit All
If you put a PlayStation game into an Xbox, would it work? Of course not. So does that mean the Xbox is broken? No. The same thing applies for a child with autism. Just because they dont learn the way typical children do doesnt mean there is something wrong with them. It means that we as parents, caregivers, friends, neighbors and teachers need to find different ways to try and make a connection.
Laura Jones, Lambertville, New Jersey
Mapping The Futures Of Autistic Children
Researchers can roughly project what autistic childrens lives will look like years down the road. But how good is their crystal ball and what are its benefits?
by Elizabeth Svoboda / 14 July 2021
Listen to this story:
Kimberlee McCafferty knew something was different about her son Justin when he was just a baby. He had stopped babbling around his first birthday. He rarely accepted the food she offered or interacted with others, and his favorite pastime was spinning his toys across the wood floor. Before he turned 2, Justin was diagnosed with autism.
The diagnosis sent McCafferty, of Brick, New Jersey, on the kind of medical odyssey familiar to many parents: batteries of behavioral tests, dietary changes and a menu of therapy options. A few months into this journey, an autism specialist at Georgetown University in Washington, D.C., examined Justin, who is now 18, and rendered a sweeping judgment about his future. Your child will never speak or live independently, the doctor told McCafferty flat out. His words dropped like an anvil, leaving McCafferty shaken. I remember thinking, Thats a pretty damning statement to make when the child is not yet potty trained.
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It Won’t Always Be Like This
“During the hardest times, when my son wasnt sleeping or eating or when he melted down over lights and sounds, I wish I knew it wouldnt always be like this. I wish someone would have told me that the child I have now will grow and change and regress and thrive. You will feel frozen in time at different points. Know that it will get better. And harder. It will change.”
Kate Swenson, Cottage Grove, Minnesota
Looking Into The Future For A Child With Autism
As my sons limitations became clearer, I found it harder every year to write a vision statement for his I.E.P. Then he showed us how.
The authors son Ethan Floquet, who has autism, at Puffers Pond in Amherst, Mass., in 2009.Credit…Josephine Sittenfeld
How do you write about the happy life you hope for your child to have when you have a hard time picturing it yourself?
For 18 years, Ive dreaded the yearly ritual of writing a vision statement for an Individualized Education Plan, or I.E.P., for our son, Ethan. He has autism and, as any parent of a child with significant special needs knows, the yearly team meeting to develop the I.E.P. can be emotional and fraught. For us it has felt, at times, like an annual adjustment of expectations downward. In theory, the vision statement is a lovely idea an opportunity for parents to articulate the optimistic future they envision for their child five years down the road. In reality, as Ethan grew up and his limitations cognitive and behavioral became clearer, I found it harder every year to write the short paragraph. We came to see he couldnt live independently, get married, work in a job without support but if those are the givens, what does a hopeful future look like?
What we wrote for his vision statement that year reflects our rock-bottom expectations: We hope that Ethan can remain with this program for the year.
Then he surprised us. He worked there for a month and we got no phone calls.
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How Are Autistic Adults Impacted When Their Parents Die
Everyones situation differs, but research shows that people on the autism spectrum often have a hard time transitioning into adulthood. When special education services end after high school, autistic young adults without an intellectual disability may not qualify for more services. Difficulty getting a job or going to college means that many continue to live with their parents into adulthood.
A 2015 report by the A.J. Drexel Autism Institute found that 87% of adults with autism lived with their parents during their early 20s, compared to 21% of the general population. Approximately one in four were socially isolated, meaning they never talked with friends or were invited to events within the past year. Unfortunately, too many people with autism have small or nonexistent support systems outside their family.
Furthermore, employment rates for autistic young adults are low. Only about 58% hold a job in their early 20s, while 95% of people with a learning disability do. These rates improve further out from high schoolsix to eight years afterward, 93% will have had a job at least oncebut the majority of these jobs are part-time and/or with low wages.
All in all, a variety of factors make it hard for some autistic adults to support themselves and live independently. When their parents die, this can leave them struggling with poverty, homelessness, or an early death.