Nothing About Us Without Us
John Elder Robison is an autism expert who feels empathy for all the autism factions who spar on the internet. A best-selling author of memoirs about his own autism diagnosis at age 40 and a leader of neurodiversity initiatives for universities and U.S. government committees, Robison is also the son of an autistic father and the father of a 31-year-old autistic son.
In a recent Psychology Today essay with the headline Your Autistic Child Is Perfect and May Need Help, Robison addressed the autism wars being waged online.
In the autism community, we often say, Nothing about us without us, meaning any conversation about autistic people should be led by autistic people, Robison wrote. It makes sense, but its not the whole story in this case. There is another equally valid perspective. Nothing about us without us applies equally well to parenting. … If the topic is parenting an autistic child, what better voices than autistic parents?
Robison, 64, of Western Massachusetts, told TODAY that he understands why many parents feel blindsided and afraid when their children are diagnosed with autism an experience shared by 1 in 54 children in the United States.
Many parents see it as a terrible, terrifying disability, Robison said. They wonder: Will my child be able to live on their own when Im gone? Will they find a partner? Its scary! These parents feel a lot of stress and a lot of fear. …
Why Are These Legal Documents Critical
Over the years, Ive heard many parents and caregivers explain the incredible challenges of navigating finances and healthcare after their autistic child reaches adulthood. And this is especially true if there are no legal documents in place that allows parents to have some oversight in their childs decision-making after they turn 18.
Legal documents may be necessary because autism often affects executive functioning, expressive and receptive language skills, and social skills leading to unforeseen challenges in the adult world.
For example, executive functioning challenges may make it difficult for an autistic person to organize their finances and pay bills on time. This could lead to loss of housing or referrals to debt collection agencies.
Autistic individuals may also have a higher risk of exploitation and victimization from others due to social difficulties. Because of this, they could experience fraud or other financial abuse without essential legal safeguards in place.
Additionally, expressive and receptive language challenges could lead to miscommunication with authorities, resulting in unwarranted legal issues.
Challenges with healthcare can also occur. For instance, in the U.S., medical professionals cannot discuss an adults medical situation with parents or caregivers without guardianship or active power of attorney for healthcare. So, an autistic person may not have the support they need in a medical emergency.
How To Get Your Adult
“How can I motivate my adult son to develop some sense of responsibility and think in terms of becoming a productive member of society?”Here are some concrete steps to help that adult child gain the self-reliance needed to move out of your house:==> Launching Adult Children With Aspergers and HFA: How To Promote Self-Reliance
- He can eat cheap .
- He can take the bus.
- If he doesnt have the money for cigarettes or alcohol he doesnt get them.
- He can get clothes from Salvation Army or Goodwill.
- enjoy peaceful evenings in your own home
- have the environment you want in your home
- spend your money on things for yourself
- Are you in a place where your boundaries are being crossed and you need to establish some limits?
- Are you willing to allow your adult child to live in your home, within those limits, as he moves toward being more independent?
- Do you see your child as wanting to become independent, or as simply being more comfortable allowing you to take care of all the responsibilities?
- Has the situation become so intolerable perhaps even explosive that your main concern is getting your young adult out of your house, as quickly and safely as possible?
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The Moment That No One Ever Talks About In Special
Today, Swenson is careful about what she posts on her , which has nearly 700,000 followers. Shes more forthright about caregiving realities in a closed, paid supporter group shes created on Facebook.
It feels like severe autism is the forgotten end of the spectrum. Its so hidden away for safety reasons, Swenson said. Kids like Cooper were institutionalized not that long ago just 30 to 40 years ago. That was the choice parents felt they had to make. If I dont share his story, how will kids like Cooper ever get the support they need?
Lamb, the mom of Charlie in Austin, Texas, said shes determined to keep sharing posts about her son online. She expects to deal with hostility as a result.
Other parents are starting to stay quiet online because theyre too afraid, but I cant do that, Lamb said. Ive found a strength I didnt know I had.
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Independence For Autistic Adults
As autistic adults gain more independence, they are able to more fully engage in the world around them. This increased independence can lead to greater opportunities for employment, education, and social interactions. Additionally, autistic adults who are more independent are better able to advocate for themselves and their needs. This can help to break down barriers and misconceptions about autism.
While autism is a developmental delay, it is frequently overlooked in regard to skills acquisition. I was unprepared to face autism when I was 20 years old, despite knowing that I had the condition. I contacted my mother because I did not know what some things she knew. When youre in doubt, you shouldnt try anything. As a result, I did. When I told him how much he needed to learn how to ask for help from others, he cried. When I pushed for independence as a mother, I realized it was sending the wrong message.
There is no such thing as independence for everyone. When it comes to the NT, not even the most advanced NT can function independently all the time. More than half of those with As believe their parents will be expecting a child. When you set arbitrary and unrealistic deadlines, such as promising to do everything we can to make you independent, you put your child under a lot of stress and anxiety.
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Launching Adult Children: Guide For Parents Who Want To Promote Self
Your older teenager or young adult child isnt sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? this will be the most important letter you will ever read:wish
- Is your child 17-years-old chronologically, but more like a 9-year-old emotionally?
- Is your child now an adult and still living at home doing NOTHING?!
- Are you concerned that you will be taking care of this child well into his 40s?
- Do you have serious doubts that your child will be able to make it in life?
- Does the thought of him living on his own worry you beyond measure?
- Is he more concerned with video games than getting a degree, learning a skill, finding a job, or dating?
The Launching Adult Children With Aspergersand HFA Guide is guaranteed to increase your child’s motivation level, empower him to either seek employment or continue his education, and assist him in developing self-reliance, confidence, and a passion for life!Testimonial:They Are Cautious or CluelessThey Are UnpreparedThey Have Mounting DebtThey Have Personal ProblemsDo you want your child living with youwhen he’s 20 …30 …40 years old?How much longer are you willing to waitfor him to begin to take some responsibility?The idea of being independent can be frightening for teens on the spectrum and equally scary for parents. This can be due to:crisis-freerewardingTrestimonial:know to help their adult child:
How To Help Adult Children With Asd
Given the complexity of challenges facing adult children on the spectrum, there is clearly no quick fix. What concerned, supportive parents can do, however, is to:
- Embrace the gifts that come with their adult child being neurodiverse and be tuned in to their struggles to reduce a sense of unwittingly expressing blame or shame.
- Do what you can to help your adult child on the spectrum get counseling and psychiatric care if warranted.
- Be patient and empathetic to their differencesdon’t be locked into seeing your child’s ASD as necessarily a negative thing.
- The biggest supports for your adult with ASD stem from realizing where the boundaries are between what you can healthily do and not do to help them cope with stressors, what they need to do to accept certain challenges, and continuing to encourage them to rise above frustrations to strive to overcome/manage obstacles.
References
Bernstein, J. . The Anxiety, Depression, & Anger Toolbox for Teens, PESI Publishing, Eau Claire, WI
Bernstein, J. . 10 Days to a Less Defiant Child Perseus Books, New York, NY.
Bernstein J. Liking the Child You Love, Perseus Books, New York, NY.
Bernstein, J. . The Stress Survival Guide for Teens. Oakland, CA: New Harbinger Publications.
Bernstein, J. . Letting go of AngerCard deck for teens. Eau Claire, WI: PESI Publishing.
Bernstein, J. Why Can’t You Read My Mind? Perseus Books, New York, NY.
Bernstein, J. . Mindfulness for Teen Worry: Oakland, CA: New Harbinger Publications.
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Life Skills And Autism
For people with autism, learning life skills is essential to increase independence at home, at school and in the community. By introducing these skills early and building block by block, people with autism gain the tools that will allow him or her to increase self esteem and lead to more happiness in all areas of life.
Our life skills strategies and ideas will help our community get started and provide tools to support continued learning through the transition from school to adult life.
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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Failure To Launch: Tips For Parents With Young Adults On The Spectrum
When you think of Failure to Launch you may remember the 2006 romantic comedy about desperate parents who hire a glamorous woman to pry their son out of his too-comfy life at home. For typically developing young adults, this story usually has a happy ending.
The reality facing many parents of young adults with autism spectrum disorder is quite different. A series of reports recently published by the AJ Drexel Autism Institute Life Course Outcomes Program indicated that about one-third of high school graduates with ASD attend college, less than 20% of adults with ASD live independently, and less than 60% have a job. Often parents realize that its a family affairthat everyone needs to change in order for a son or daughter to achieve greater independence. Here are a few steps to consider.
Innovative Housing Options Help Autistic Adults Find Independence
Associated PressApril 8, 2017
DALLAS Masha Gregory was nervous to move out of her parents home and into her own place, where the 26-year-old Pennsylvania woman worried about making friends and being away from her parents. But after living in her own apartment at a complex that focuses on adults with autism, shes made new friends and found she loves her independence.
It was great to move out because I have my own life now, said Gregory, who lives in a Pittsburgh-area development where half of the 42 units are for those diagnosed with autism. I want to be able to come and go as I please, said Gregory, who likes to draw and take photographs.
The complex, called the Dave Wright Apartments, opened in December and is among innovative housing developments popping up across the U.S. to serve those who were diagnosed with autism as children amid increased awareness about the disorder and changes in how its defined. The developments are often spearheaded by parents who see their adult childrens desire for independence and wonder who will care for them in the future.
According to the A.J. Drexel Autism Institute, 87 percent of adults with autism live with their parents at some point between high school and their early 20s a far higher percentage than the general population.
Gregorys mother, Connie, said her daughter is thriving in her new home.
I think she realizes that she fits in, Gregory said. I dont know that she would feel as secure anywhere else.
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Tips For Parents Before They Share
An array of autism experts, autistic adults, disability advocates and parents offered the following tips for moms and dads before they share information about their own children online:
1. Find your people
The balanced advice I would give parents is this: find parents who have children whose autism manifests the way your childs does, Robison said. Its not going to do you a lot of good to go to a Facebook group with people who arent dealing with those same things. Then try to meet those people for real, in real life not just on the internet.
2. Think small and stay local
Kerry Magro, 33, of Hoboken, New Jersey, was diagnosed with autism as a young child and didnt start speaking in complete sentences until he was 7. Today, hes a public speaker, disability advocate and of three books, and he has a doctorate in education. His dissertation focused on parents efforts to find resources in online communities.
For a lot of parents, its best to stay away from large groups in the disability community because of all the conflicting opinions, Magro said. Small, localized Facebook groups are best for therapy referrals and other advice in your local area. … Its a good way to move away from all that toxicity online.
3. Engage with autistic self-advocates respectfully
4. Mind your terminology
Certain terminology can be seen as loaded, dated or insensitive in some autism circles. To learn more about this, .
5. Speak for yourself, not your child
Network With Other Parents
Sometimes the best advice comes from those whove been in your shoes. Networking with other parents in the autistic community can connect you to support and understanding that can make your role easier.
Your childs pediatrician may have contact information for parent support groups in your area, or you can try searching online.
These autism organizations and resources may offer support and social connection:
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High Functioning Autism Symptoms
- Unusual Movement Patterns
Diagnosis rates for autism continue to rise, especially as parents and professionals become more familiar with the symptoms of high-functioning autism. Many patients are getting the assistance they need to live full, productive lives because their unusual behaviors are no longer seen as simple social awkwardness or eccentricity. As more caring medical and mental health professionals learn to recognize the most common symptoms of autism, the number of interventions available to people with autism will rise.
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Autism In Adult Children Is A Growing Problem
People are increasingly diagnosed with ASD. According to the Centers for Disease Control and Prevention, in 2018, one in 44 children aged eight years in the United States was identified with autism spectrum disorder . True to its name, the challenges of autism really do fall on a spectrum. This means the types of symptoms, combinations of them, and their severity ranges widely between those who are diagnosed with them. While there is diversity in the struggles of adult children with ASD, there are some pronounced relatively common struggles.
According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition , combined with my clinical observations over thirty years, the main signs of autism spectrum disorder common in adult children include:
- Finding it hard to understand what others are thinking or feeling.
- Getting highly anxious about social situations.
- Being obsessed with a topic and obsessively talking about it.
- Finding it hard to make friends or preferring to be on their own.
- Autistic inertia, which is the notion that when people with ASD stop doing a task, they have a hard time resuming it. Further, once they have started working on a task or project, it can be really difficult to stop.
- Seeming blunt, rude, or not interested in others without meaning to.
- Finding it hard to say how they feel.
- Taking some things very literally.
- Not understanding social “rules,” such as not talking over people,
- Avoiding eye contact.
Also Check: Is Dyspraxia Related To Autism
Why Is It Important To Diagnose Autism In Adults And Teenagers
Getting an autism diagnosis is key if you or your loved one will get the development support that they need. However, it is also essential for a persons wellbeing.
Even if you have lived with undiagnosed high functioning autism for years, this can have a serious impact on you. Many people with high functioning autism often feel like something is wrong with them or like they should be able to cope. This is because they are trying to maintain a neurotypical processing pattern.
This can be exhausting for the individual and can have a serious impact on their mental health. People living with high functioning autism experience other conditions such as depression, anxiety disorders, and even suicidal ideation.
On top of this, you may struggle to build and maintain close social connections.
Getting an autism diagnosis even in later life can help you to understand the way that you function better. It also ensures that you get access to the support that you are entitled to.
To do this, you need to spot the symptoms of high functioning autism in adults and teenagers. Lets take a closer look at some of these.