Wednesday, July 17, 2024

Growing Up With Autism

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When Autism Grows Up

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Parents of children with autism can sometime exhibit overwhelming feelings of stress, anxiety and maybe relief when their child is diagnosed with ASD. They are in search of direct answers and life changing remedies. They make life changing decisions and even vow to cure and stand by their child. Through online testimonies, blogs, interactive organizations, research and even literature, parents and guardians of autistic children have the opportunity to connect and build a supportive community to protect, teach and learn with their child. Tracy Beadle, a mom of two autistic children, shares her testimony on Ambitious about Autism., she shares that its okay for you to cry, to question, to feel frustration and to be angry. She encourages parents to take all help offered and to shout vigorously for more. .

Organizations like Disney have stepped up and made changes to the program providing access to guests with disabilities. I believe on a federal level policy is already in effect to help many children diagnosed with autism get the medical coverage to in order to get the proper autism treatment. As a society we need to do more. Not stigmatize people with autism or people with any disability. It seems as though that once you have a disability that is all you have. Society has to stop isolating people with disabilities. Making them seem as though there less than or broken and in need of fixing.

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Dont Be Afraid To Ask For Help

And by ask for help, I dont just mean in lessons. I mean with the really serious stuff too.

Mental health is quite a focal point right now, and professionals are treating it more seriously than theyve ever done before. Especially with teenagers and young adults.

If you need guidance or counselling, ask for it. If you dont feel comfortable asking your doctor yourself, ask a parent to do it for you. Those services exist for a reason- if you need them, use them!

Random note: placed here so it can only be seen by people actually reading this. This article has been stolen from Autistic Not Weird too many times to count, so if youre reading this anywhere other than its original source, they have stolen it without my permission and are tricking readers into sharing it. Please find the original at this link.

Autism And Growing Up

The first few months of high school for me were really frustrating. I felt extremely alone and isolated. Everyone was asking my name, and showing me around but all I could do was look around and stare at the floor in silence.

Whats your name? – One of the teachers has asked me. I made small letter-shapes on the floor to slowly spell my name. I was too anxious to even take out my writing board and write my name.

Why does the system have to constantly traumatize their students like me, and especially when approaching the last few years of elementary school, constantly coercing students to get good grades and succeed?

Teachers never tell their students, if you get a good grade, you will get as many candies as you like! Or if you finish this sheet, you wont get any new assignments or homework for two weeks!

But, instead of taking that approach, teachers usually end up making their students extremely anxious and depressed, constantly instilling fear and other negative emotions in their autistic students. For most autistic people, the regular approach of motivation clearly doesnt work and we need a more understanding and compassionate approach specifically tailored to us.

We constantly get told, When you grow up – you will have more responsibilities, you need to get ready for high school and adult life. You need to be prepared for the future.

As a result, most people on the autism spectrum find it easier to avoid than to be prepared, and I am one of those many people.

Also Check: Are Children Born With Autism

Is There A Test For Asd In Adults

Clinicians have developed different tests that can help diagnose ASD in adults. These include diagnostic tests such as ADOS 2 Module 4, ADI-R, and 3Di Adult.

However, it is not clear how reliable these tests are for adults. The reasons for this include:

  • Researchers who look at the reliability of ASD tests often use a small number of study participants.
  • Not many research studies on testing for adult ASD include enough participants from historically underserved groups, such as People of Color or people who are LGBTQIA+. This means the results of studies looking at ASD testing methods may not represent a true population of autistic adults.
  • Many clinicians may not be familiar with the signs of ASD in adulthood. This is especially true if the patient√Ęs symptoms are not severe or if the patient also has other conditions, for example, anxiety.

Autistic people may have of co-occurring conditions, such as anxiety or depression, than those in the general population.

Know That Medical Issues Can Be Involved

Video Spotlight: Growing Up With An Autism Diagnosis  Did It Help ...

I wish I had known about the invisible medical issues of autism right from the start. For years, I had no idea that gastrointestinal dysfunction, including constipation, acid reflux, inflammation and pain, could dramatically affect my sons sleep patterns, mood, irritability, aggression, attention, and even communication. Our son had to power through those problems all by himself on a daily basis, and it breaks my heart that we never suspected the cause of many of his struggles.

Janet Lintala, West Virginia

Read Also: What Causes Autism In Toddlers

Growing Old With Autism

For many autistic adults, the golden years are tarnished by poor health, poverty and, in some cases, homelessness. Their plight reveals huge gaps in care.


Kurt remembers very little of what happened during the 4th of July weekend in 2009. Then 49, he had been in his apartment when all of a sudden he became dizzy, nauseous and unable to speak properly. The right side of his body felt sluggish, so he called a friend to take him to the hospital and then staggered to his bed.

When Kurts friend arrived, he phoned Kurt but got no answer. Peering through a window, the friend spotted Kurt in bed, not moving, so he ran to find the building manager, who let him in.

The friend helped Kurt to the car and drove him to the hospital, about a mile away in Silver Spring, Maryland. A neurologist there determined that Kurt had had a stroke. His speech was garbled, and he had trouble moving one of his legs. After talking with Kurt, the doctor jotted down an additional diagnosis code for Asperger syndrome, a form of autism.

Growing Up With Autism Talias Story

From a young age, Talia had a feeling that she was different. She felt alienated, especially at school, and found it difficult to fit in. Growing up, Talia was continually told off by her teachers at school. This caused her great anxiety as she didnt know what she was doing wrong. She would often leave the classroom, feeling overwhelmed and stressed, and her teachers struggled to understand her behaviour. She was often made to feel that she was being naughty when in reality, she was suffering from Autism and needed support, empathy and understanding.

However, with limited knowledge or understanding of Autism, her teachers and classmates often told her she would never excel in a social school environment. As a result, she believed she was an outcast and would never fit in with her peers.

Being diagnosed with ASC

After consulting a mental health professional, Talia received a diagnosis of Autism Spectrum Condition . This diagnosis helped her make sense of her thoughts, feelings and behaviours. It also made her realise that she was different to the people around her but that there was a reason for this.

Having a diagnosis of Autism helped me realise that Im not an outcast

Talias experience of growing up with Autism is not uncommon. She describes suffering from anxiety, depression and panic attacks, which are common mental health conditions associated with autism. In fact, 70% of children with ASC develop at least one co-occurring mental health issue.

Recommended Reading: How Early Can Autism Be Diagnosed

How Do Autism Spectrum Disorders Develop

Autistic spectrum disorder is a neurologic and developmental disorder that affects the way people think, act and relate to others. It’s characterized by difficulties in social interaction and communication as well as repetitive behaviors or restricted interests. People with autism spectrum disorders may have problems understanding other peoples emotions and intentions they often find it difficult to interpret nonverbal cues such as tone of voice and facial expressions.

Secondary School/high School Means Less Than You Think

Growing up with Autism : Nip in the Bud

Sounds difficult to believe, but trust me.

Back when I was at secondary school, it was the biggest part of my world. I was there five days a week, with people I liked and people I hated. Bullies dont need much ammunition, and I gave them loads. And when youre at school, each year can feel like a long time.

Then I left secondary school.

I never met the bullies ever again.

And I never worried about how bad I was at subjects I didnt care about.

And, best of all, nobody in the real world cared whether I was cool in Year 11.

Im serious! Those cool kids? Those popular guys who seem to love hurting people? I almost feel sorry for them. They had no idea that once they left school, that coolness would mean absolutely nothing.

I left school and eventually found my dream job. They left school and well, I actually dont know what they did. Truly dont care, to be honest. They might as well no longer exist.

I know that if you dont get on well with school, it can feel horrible.

But it does not last forever. And once its gone, its gone for good.

Edit- two months after uploading this, I wrote an article specifically devoted to bullying issues. If you need advice in this area, you can find the article here: 8 Tips for Coping with Bullying .

Recommended Reading: Can Autism Go Away With Age

Variability In Adults With Autism

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.
  • Some 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.

In All You Do Remember How Much Youre Loved

This is another bit of advice Id give to anyone going through hard times. If all else fails, remember the people who value you. Because their love for you is so, so, so important.

Anyone who really values you will offer you a shoulder to cry on when you need it. Find the people who are there for you, the people you know you can trust, and dont be afraid to rely on them.

Not everyone will say how much they care about you, of course. Some people only save those words for special occasions, or others are just too shy to say it. That doesnt mean that they dont care about you. Different people express their love differently, but mean it just as much.

By the way, if there are any readers here who honestly dont think theyre valued, not even by friends and family, dont lose heart. There are thousands and thousands of people out there who would care about you if they knew you. The secret may be finding new people. As tough as you might think that is, there will be good people out there. Maybe try a club that youre interested in , or even your local church if thats your kind of thing.

Recommended Reading: How To Test For Autism

How You Can Support Seniors On The Spectrum

The following suggestions were compiled from various websites and publications. These ideas should not replace professional advice. However, they may prove helpful during times of transition.

  • Create a safe environment. Make sure there aren’t too many distractions like TVs, radios, phones, computers, pets, etc. Also make sure everyone knows how to contact emergency services.
  • Be patient. Seniors often need time to adjust to changes. Give them space to process things before asking questions.
  • Be ready for an eventual loss of sight, hearing, balance, etc. You can search for a professional medical staff that can help guide your loved ones through this difficult period.
  • Make plans ahead of time. Discussing future goals will give your loved ones something concrete to work toward. They’ll also feel less overwhelmed knowing where their priorities lie.

Seniors with autism experience life quite differently than people without the condition. While these strategies might seem obvious, they’re worth mentioning because they could save your loved one yearsof frustration and heartache down the road.

As the link between the severity of autistic traits and older age has been demonstrated, it is important to consider whether interventions aimed at improving cognitive abilities may benefit individuals with ASD across the lifespan.

In addition, some studies have suggested that early intervention may reduce the risk of developing dementia in late life.

Growing Up With Autism

Growing Up with Autism (Paperback)

So basically school was a nightmare for me. I didnt have a lot of friends and people picked on me. I was very sensitive. So I just wanted to be left alone, and after school it just felt like I had survived another day of warfare, I just wanted to be left alone.

I was basically brought up on TV. I watched you know Different Strokes, Facts of Life. Scooby Doo, you know, and I thought pro wrestling was real. I really liked NWA, which was a Wrestling Federation back then. People like Ric Flair, the road, road warriors, Ron Garvin. You know all these pro wrestlers they really were realistic back then I remember debating with my PE teacher that pro wrestling was real. He laughed at me and it really insulted me and made me super mad.

There were many times I didnt dress up for PE to the point where my nickname was nonsuit. EriK nonsuit Johnson, and they would announce it over the speaker in the gymnasium when we would be doing, you know scrimmages and stuff the PE teacher thought it was funny to announce me as Erik nonsuit Johnson.

Now I did play a lot of soccer. But I didnt think about my teammates really, I just thought about, you know, getting the ball and getting a goal, making my own goal. Not really playing well with others.

When I was 18, my dad was like youre out of here. You know, he wasnt gonna kick me out one day earlier, he was gonna do it legally the day I turned 18 he was like youre gone.

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A Legacy Of Bullying And Blaming The Victim

If conformity was king in the classroom of the mid-20th century, then students on the spectrum faced particular challenges. Their autism unrecognized, they were sometimes regarded as willfully nonconformist, disruptive, or emotionally unstable. Some managed to earn stellar grades, while others muddled along academically, sometimes in special education classes, sometimes not. “These are the lost generation: those who today would receive their diagnosis by 6 or 8 years old, if they were a 21st century child,” according to British researchers.4

Many told stories of being teased and assaulted as children and teens. Kiran Puri, now 49, vividly recalls her elementary school years in Missouri, where classmates exploited her trusting nature and desire to “fit in.” In the lunchroom, one girl demanded that she put half an orange in her mouth, then taunted her when she did it. Later on, a fifth grader insisted she imitate “what you do when you go to the bathroom,” said Ms. Puri, who was diagnosed with Asperger’s at 43. “I would get bullied because I was gullible and too eager to please,” she said.

Autism: A True Increase Or Semantics

The jump in autism cases has spawned not only alarm but also debate about whether the number of children with autism could have increased that much in a relatively brief time.

“There’s a lot of controversy about that,” says Jeff Milunsky, MD, director of clinical genetics and associate director of the Center for Human Genetics at Boston University.

Two researchers who tracked the rate of autism in children born in the same area of England from 1992 to 1995 and then from 1996 to 1998 found that the rates were comparable, and concluded that the incidence of autism was stable. The study was published in the American Journal of Psychiatry in 2005.

But, Milunsky says, several studies have documented an increase in the U.S.

In a recent report in the journal Archives of Disease in Childhood, Milunsky and his colleagues point to several studies finding an increase in autism rates. In 2003, for instance, a large study conducted in Atlanta found that one in 166 to one in 250 children had autism, according to a report published in the Journal of the American Medical Association.

Another study conducted by the CDC in 14 states found an overall prevalence of one in 152, which Milunsky and others say is the generally accepted figure today.

“A kid labeled autistic today could have been labeled mentally retarded 10 years ago in the same school system,” Shattuck says. It wasn’t until 1992 that schools began to include autism as a special education classification.

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