Should I Camouflage My Autism In Social Settings
Research has shown that authenticity is an integral part of mental health and well-being. Yet many people with autism are taught, or teach themselves, to modify their behavior to conform to social norms and expectations.
Identifying and unraveling deeply ingrained habits is difficultit requires courage and assertiveness. But doing soand perhaps finding a supportive neurodiverse communitycan eliminate shame and stress and help to cultivate dignity, connection, and self-acceptance.
So What Do I Want You To Do About It
Ive spent my whole life being told that non-autistic people are so brilliant and intuitive when it comes to social issues. Like many autistic people, though, I havent always felt like Ive seen much empathy, compassion, or understanding. And the evidence is starting to suggest that were not wrong about the level of judgment and stereotyping we face.
If you want to understand people on the spectrum, Id recommend starting with some of the following: Listen to us. Invest in our work. Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure. Dont kill us. Think twice about sympathizing with the parents who do kill us. Dont rush to armchair-diagnose every mass murderer with autism like what happened with the most recent Florida school shooting. Give your money to marginalized autistic people instead of charities like Autism Speaks, which dedicate only a small percentage of their budget to programs that will actually help autistic people. Think about how hard were working to exist in your world and consider meeting us halfway.
Tell us we dont bore you. Tell us we dont drain you. Look at us somewhere other than the eyes were really not comfortable with eye contact and are tired of being forced to make it for your benefit and tell us that we deserve to be alive.
And then act like it.
Autistic People May Act In A Different Way To Other People
Autistic people may:
- find it hard to communicate and interact with other people
- find it hard to understand how other people think or feel
- find things like bright lights or loud noises overwhelming, stressful or uncomfortable
- get anxious or upset about unfamiliar situations and social events
- take longer to understand information
- do or think the same things over and over
If you think you or your child may be autistic, get advice about the signs of autism.
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Heightened Risks For Individuals With Autism
In 2018, Sarah Kurchak penned an essay for Vox where she discussed facing mortality at age 36, the average age when people like me die. People with autism face challenges that neurotypical adults may never be aware of, she writes. While many might assume that those challenges end with socio-emotional language limitations, the fact that autistic people have a higher mortality rate adds to the burden.
For example, the American Journal of Public Health wrote that people with autism appear to be at substantially heightened risk for death from injury due to getting lost, not being able to ask for help, not being able to give their name or emergency contact information, or becoming so overstimulated that they panic and put themselves in harms way.
The lower-than-average lifespan for autistic people also has racial and gender overtones. Autism is a deadly hazard when dealing with the police, writes Forbes magazine, because of a number of cases where police officers have taken noncompliant and noncommunicative behaviors from autistic people to be signs of suspicion and, in the case of overstimulation, hostility.
I Was Just Diagnosed With Autism What Do I Do
Allow yourself time to process this change. A late diagnosis of autism can change your self-conceptoften for the betterbut recognize that it may take time to fully understand or embrace.
Your next steps may be to learn more about autism, read about other peoples experiences, or seek out adults with autism for community. If your diagnosis was prompted by difficulties at school or work, you should explore what accommodations are available to help you function more effectively.
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What Can I Expect In The Future For My Child With Autism Spectrum Disorder
Autism Spectrum Disorder is hugely variable. People with ASD can have opposing symptoms. There are children with ASD who dont like to be squeezed and cannot even tolerate a handshakeothers crave the sensation so badly they bump their bodies into others. Sometimes individuals with ASD are so high functioning, people dont immediately realize there is something different about them. Other times, they are unable to speak or take care of their physical needs. The futures of individuals with ASD can vary as much as their symptoms. Just like neurotypical individuals, the future of people with ASD depends on their strengths, passions and skillsets.
MPG can also offer early intervention services to help your child.
Autism and Marriage:
Autism and Careers
The skills an individual with ASD has will impact what kind of career they can explore. Of course, this is true of the general population as well. There are several extremely successful individuals with ASD who have written about this.
Dr. Temple Grandin, perhaps the most famous individual with ASD today has some excellent advice for choosing a career when one has ASD based on individual thinking style:
Adults With Autism Have Rights: What You Should Know About The Ada
The Americans with Disabilities Act legally protects people with autism against discrimination in employment, education, transportation, and other public accommodations. The legislation has many applications for people with autism.
The ADA requires that an employer provides reasonable accommodations to an employee or a job applicant with any kind of disability unless they would somehow endanger themselves or others by carrying out that role, and as long as they are otherwise qualified for the role. The law also helps ensure that publicly-funded housing opportunities are also available to people with autism.
Individuals with autism may also be eligible to receive Medicaid benefits . Services can help pay for long-term healthcare costs, as well as other basic living needs. Others may be eligible for Social Security benefits, too, which can also help cover the cost of basic needs.
Frazier adds that sometimes discriminatory practices might not be apparent right away, and that it is important to know your rights and know that a business cant refuse services to someone who might be showing signs of being on the spectrum, for example.
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Planning Starts At 14
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.
Mitochondrial Disease And Autism
Mitochondria are cellular components that turn sugar into energy. Mitochondrial dysfunction interferes with proper cell functioning within various systems of the body, including the brain. In the Federal court case of Hannah Poling, mitochondrial disease was found to be the underlying condition that led to autism after she received double doses of the MMR vaccine. It is important to note that not every case of mitochondrial dysfunction manifests as autism, and not every person with autism has disease in the mitochondria.
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What Percent Of Adults With Autism Live Independently
Young adults with autism are more likely to live with their parents and least likely to live independently after leaving high school as compared to those with other types of disabilities, researchers say. Only about 17 percent of young adults on the spectrum ages 21 to 25 have ever lived independently.
Learning Daily Living Skills
One of the most effective ways for autistic adults to learn independent living skills is to start with small tasks. Lets look at cooking a meal, for example.
As a child, they can be taught how to gather ingredients for a meal from the fridge and kitchen cupboards. As they get older, you can have them cook meals with you. Eventually, they can practice cooking a full meal on their own from beginning to end.
Real life practice is the key to independent living for autistic adults. It cannot be assumed they will be able to learn how to imitate skills by watching others.
Setting a larger goal to work toward also helps. Something that will incorporate multiple daily living skills they have learned.
As an autistic young adult enters the later years of high school, there are many opportunities for them to practice the daily living skills theyve learned up to that point.
Going to the mall on their own to pick out new clothes and school supplies, getting a fresh haircut, making their own lunches, joining a social group and making new friends are all different ways a young adult can practice independent living skills.
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Underlying Mental Health Conditions
A 2016 study published in JAMA Pediatrics provided additional support for those on the spectrum having a higher mortality risk. The study found that young adults with ASD were twice as likely to die prematurely than young adults in the general population. This research pointed to underlying mental health conditions like anxiety and depression, which can go undiagnosed. In some cases, the symptoms of these conditions look different in those with autism, leading families and health care professionals to miss the signs that something may be wrong. In fact, up to 70 percent of people on the spectrum have another underlying mental health condition.
How To Begin A Diagnosis Process
Adults who suspect they or a loved one might be autistic can do a self-assessment test for adults. A person can find these tests online. While they cannot give a diagnosis, the tests are a good starting point.
A person seeking a diagnosis can take the results of such a test to a primary care doctor who will try to determine whether ASD may be present by:
- enquiring about the symptoms, both current and during childhood
- observing and interacting with the person
- speaking to a loved one
- checking for other physical or mental health conditions that may be causing symptoms
If no underlying physical condition can explain the symptoms, the doctor may refer the person to a psychiatrist or a psychologist to make an ASD diagnosis.
If symptoms are not present in childhood but begin in adolescence or adulthood, this may indicate a cognitive or mental health condition other than ASD.
It may be difficult to find a specialist who can diagnose ASD in adults. Individuals who would like a diagnosis for themselves or a loved one may need to do research to find a provider with experience diagnosing autistic adults.
Another option is to speak to a developmental pediatrician or child psychiatrist who is willing to see adult clients.
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Exact Answer: Less Than 50 Years
Interacting with other people happens daily. It does not require any kind of degree. From childhood parents let their children play with others, send them to schools and tuition so that they can interact with others. But there are a few cases where children cannot go out and interact due to some neurological problems.
These problems occur when an individual suffers from autism. Not only children, but adults also suffer from this problem. Autism with a learning disability leads to an early death by forty times more, while autism without a learning disability leads to death early by nine times than an average person. The lifespan of a person with autism ranges from 39.5 to 55 years.
Autistic People Cope With Loneliness Differently Than Others And Thats Okay
Whether neurotypical or neurodivergent , every individual has their own way of dealing with loneliness.
That said, autistic people may cope differently than others expect.
When talking about loneliness, many of the people I spoke with said that the timing of their autism diagnoses had a major role in the coping skills theyd developed.
Katie, the 25-year-old from Florida I spoke with earlier, was only diagnosed as autistic last year at the age of 24.
She believes that she would have learned to cope differently with stress and loneliness if shed known she was autistic earlier in life. She said:
As an autistic woman, I learned to hide my differences and internalize them from a very young age, which brought me intense levels of anxiety, stress, and depression.
To other people, I looked normal on the outside, but on the inside, I was falling apart. This is incredibly common with many autistic women, and it is called masking.
Typically, but definitely not always, autistic men stand out more and dont always know how to hide their differences.
I always did , and I hid them so well that most people didnt believe me when I started bringing up that I thought I was on the spectrum.
Those who were diagnosed at an earlier age, however, said that they had a more solid set of coping mechanisms to fall back on during times of stress.
Unlike Jasper, Cheyenne, the disabled military veteran I spoke with earlier, wasnt diagnosed as autistic until she was 28.
Bottom Line:
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Heres Why That Number Is So Low And All The Ways Im Lucky To Have Made It To 36
Some caveats. First: Not all studies on autism and mortality agree on the average age of our deaths. If you think Im being overly dramatic by picking one that appears to cite the youngest age, here are some otherrecentstudies with more positive results. One says 39 is the average life span another says 54. By positive, though, I mean studies that determined autistic people live longer, on average, than 36, but still found that we die significantly earlier than our non-autistic counterparts.
Second, whenever I write about autism, theres always someone who shows up to point out that Im not really autistic enough to count or that Im not the kind of autistic person that people are thinking about when they think of the tragedies and pressures that face people on the spectrum.
Because I can speak, work, and maintain a semblance of a social life and because I am able to hide my most severe symptoms from other people they assume that I am too high-functioning to be considered autistic. Before that happens here, let me say that, yes, I am probably at a lower risk of death than many autistic people. Not because Im higher-functioning or because my autism is mild, but because I happened to be born into a certain body and a certain set of circumstances.
Increasing Health Factors For People With Autism
One way that this problem can be addressed is by educating parents, caregivers, and health care professionals to recognize the signs of depression in individuals with autism as early as possible while continuing to improve their social relationships and skills.
Treating social anxiety disorder can also help people manage the limitations they experience with social development and help them control their compulsion to avoid social situations, like scheduling a doctors appointment. This can further teach people with autism how they can cope with the feelings of isolation and frustration that naturally arise from having autism spectrum disorder. If suicidal ideation arises, they have a system in place to process those thoughts in a healthy manner and to get support.
Bullying also has to be addressed. Physical and verbal attacks prevent autistic children and adolescents from developing socially, and they can lead to depression and suicidal ideation on their own.
Parents concerned about this can seek out school programs that offer integrated classrooms, where students with special needs are part of the general education classrooms. This naturally helps children with autism who have difficulty fitting in. It also gives non-autistic children a chance to know children with autism, so they are less likely to see those children as targets.
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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.