Tag Archives: Undiagnosed Autism

Recommended Reading

All of the following titles can be found either on Kindle or Audible – Yes I have read or listened to every one of the following books personally.

How Autism ‘Awareness’ and the School System Failed My Brother and Me

Wow THIS article by Nora Burritt contributor to The Mighty is AMAZING!

I can take no credit for the article below, although so much of what Nora had to say could be my own words. The little girl below could easily have been me -or a million other invisible Autistic women.

There is a huge problem in the way Autism is treated and how women and girls are being missed . We really are invisible and grow up wondering why we always fall short of others expectations of us.

We wonder why we are not good enough. We wonder why we are different. Eventually when the pressure gets to be too much we implode and find ourselves staring down an official Autism diagnosis – despite all the signs being visible at childhood.

Boys are diagnosed as toddlers. Women are diagnosed in their 20’s and 30’s (or older). I know a woman who was diagnosed at 68. We NEED to do better. We owe it to our sisters and daughters.

There is a photo of me at 3 years old. I am standing in a meadow on the tips of my toes, arms scrunched up like a t-rex, hands blurred from excitedly flapping.“You were so cute!” my family members coo when they pass this photo. These are the same people who look at me and say, “You can’t be autistic, you’re a girl!”

I hit developmental milestones quite differently than others. For instance, I never learned to crawl forwards, I was speaking complete sentences at a year old and reading books by 3. I wasn’t potty trained until I was almost 4 and said to my mother, “I am finished with diapers,” and that was it. I would bolt and hide in clothing racks in stores and cry when my parents made me try something new.

Sensory wise, I was notoriously known for my aversion to dirt, anything soft, loud noises, flashing lights, and many other things. I walked on my tip-toes constantly, chewed apart all of my shirts and gel toys, rocked and spun enthusiastically. I struggled with math concepts to the point where I barely skimmed by. I used to cry constantly in preschool and elementary because I couldn’t regulate my sensory system or handle my surroundings. I was often in the principal’s office because teachers misunderstood me trying to comprehend with me being insubordinate. In middle school, when a psychologist brought up Asperger’s syndrome with my mother, she laughed and called him “crazy.”

See full article here.

Finding Out About My Autism as an Adult

When you find out you are Autistic as an adult your world is suddenly completely different but still exactly the same.

My entire life I’ve felt out of step with the world. I am awkward, clumsy, often confused, but at the same time I can be shockingly clever – probably why my Aspie nature went undetected for so long.

Once you learn and begin to see yourself and the world from the enlightened perspective of Autism you can no longer return to pretending you might be “just like everybody else.” It is a shocking and undeniable truth that strikes you in the face like a cold hard fist.

Finding out you are Autistic as an adult feels so final. Before there was more hope that I may someday outgrow some of my more eccentric traits. Now I am more aware of my unique (or not so unique) habits and needs than ever. They are inescapable.

People who knew me before discovering my Autism still see me as the same person that I’ve always been. Most of them can’t believe I’m an Aspie and are questioning and skeptical – which literally leaves me speechless and unable to explain myself.

The people who know me the best hear me out and many actually seem to find the answers to their own unanswered questions in my explanations.

I literally cannot handle confrontations with anyone. They leave me speechless. If I do not get away panic sets in, I become unable to think and may lash out verbally or cry. It is childish and shameful so I run. These are the nightmares that I may never outgrow.

Autism is so – final. When you search for Autism resources online almost every result is focused on children, but Autism is a lifelong “condition”. Autistic children grow up to become Autistic adults – so here I am finding out about my Autism as an Adult.

 

 

What Does Autism Feel Like?

I was having a deep conversation (via Google Hangouts instant messenger) with a close friend about my Autism. He made a comment that he did not see Autism as a disability, but more as an alternate way of thinking that is not serviced very wall by the modern education system. I agree – partially. . .

Quickly I realized that no matter how hard I tried, there was no way I could accurately explain or convey the parts of my Autism that truly “disable” me. Searching the internet, I quickly found a few articles with other Aspie who had attempted to explain what I currently could not – the negative things that NT’s have a hard time comprehending.

“What does Autism feel like?” In that moment I was completely unable to explain.

The most disabling part of Autism (for me) may be its invisibility and my status as “high functioning”. Everyone expects me to do ok. I am smart, and use my ability to pick up on patterns to get ahead in the world. I am one of those “gifted” Aspies so my Autism must be a gift right?

My good days are amazing but on my worst days my sensory overload wont let me out of bed. Currently I am averaging about three really bad days a month. They hit at random stop my world in its tracks.

People can’t tell when I am having sensory problems. Some days are worse than others and most days I am in at least mild pain at all times. The lights hurt my eyes and head, smells make me gag, small sounds nag at me constantly, I walk into walls, trip over things, and sometimes miss my mouth when I eat.

I miss many things in most conversations. I am awkward, weird, and my intentions are often misunderstood. If someone is not smiling or looking pissed off I can’t read them – unless I know them very well. Normally I have NO clue when I’ve offended someone.

Autism feels like I am out of sync with the world and its people. I am alone in a lot of ways, that may sound sad but honestly I am happiest when I am alone with my own thoughts.

Below are some of the items I found while researching how to better explain Sensory Overload.

 I can take NO credit for anything below.

My visual experience is also rather radical. Bright light can be painful — honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense — and that sometimes makes it hard for me to focus on the central thing I’m supposed to see. I’ve found that wearing a ball cap helps me filter, by force, that which is crashing in by flood — it works in the same sense that “horse blinders” do at the race track.

Lori Sealy of The Mighty shares – My Answer to the Question ‘What Does Autism Feel Like?’ talking about her sensory processing difficulties.

One Guy’s Opinion: What it feels like to have autism as an adult by by

In general…

  • Before you know you have it, you simply assume that you have an odd personality.
  • After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.

Social experience…

  • You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.
  • You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.
  • You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.. .

Check out full article here.

Video Simulations to Help You Experience Sensory Overload

 

Carly’s Café – Experience Autism Through Carly’s Eyes

Carly Fleischmann is a nonverbal Autism advocate and YouTube talk show host. She is AMAZING. I strongly recommend you check her out.

Video HERE.

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

More great videos on Craig Thomson‘s YouTube channel.

Video HERE.

Autism: Sensory Overload Simulation

Check out the streamofawareness YouTube channel for more.

Video HERE.

Sensory Overload Simulation

More from WeirdGirlCyndi on YouTube.

Video HERE.

Are Girls with Autism Being Overlooked?

Are Girls with Autism Being Overlooked? – Yes I think they are.

Another article that I cannot take credit for but worth sharing.

While she was growing up, Fiona Pettit O’Leary sensed that she was not the same as her peers. She explains that living her day-to-day life was exhausting because “there was an ever-present feeling of disconnection.” Along the way, she experienced anxiety, depression, anorexia, and suicidality—making an attempt on her life at age 18. It wasn’t until she was married with kids on the spectrum, however, that she began looking into autism more. Only then did the light click on: she had Asperger’s. A formal diagnosis confirmed this.

Is autism truly as male-dominated as we’ve thought, or have girls with autism been slipping through the cracks?

Please check out full article here on TheAutismSite.com blog.

The Invisibility of Black Autism — Discover

More from my news feed. I’ve written openly about the invisibility of Autism in females, but women and girls are not the only Aspies being missed.

Steve Silberman, the author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, explores the challenges faced by autistic people of color in gaining access to proper health care.

via The Invisibility of Black Autism — Discover

The Economist – Dealing with Autism -Beautiful Mind Wasted

How not to squander the potential of autistic people. 

This article, although it reads as quite cold and is definitely not from the perspective of an Aspie,  it brings up a good point and talks about problems Autistic people face in schools and the work place.

Autism is a condition that defies simple generalisations. Except one: the potential of far too many autistic people is being squandered. Although around half of those with autism are of average intelligence or above, they do far worse than they should at school and at work. In France, almost 90% of autistic children attend primary school, but only 1% make it to high school. Figures from America, which works harder to include autistic pupils, suggest that less than half graduate from high school. In Britain, only 12% of higher-functioning autistic adults work full time. Globally, the United Nations reckons that 80% of those with autism are not in the workforce.

Original article  by on The Economist

Danya20: “Different, Not Less” — Danya Blog

I’m always on the lookout for good blogs in my news feed. Here is another one. 🙂

Dr. Temple Grandin, animal behavior expert and author of The Autistic Brain, once stated, “I am different, not less.” Danya International has believed in this sentiment from our very beginning. Many of the Small Business Innovation Research (SBIR) grants that we received throughout our early years focused on how to help facilitate inclusion and communication […]

via Danya20: “Different, Not Less” — Danya Blog

Being Anonymously Autistic

Growing up undiagnosed, I’ve already been anonymous for my entire life.

Wondering why I could not seem to be like everyone else my entire life was painful, however discovering my Autism has provided me with answers and allowed me to have compassion for myself like never before.

I spent my life trying to be like “them” – normal people, only to find that most of the time I either excel beyond what “they” were capable of or fail completely, depending on my level of dedication and focus. There is no middle ground with me.

This world was not built for me. Tormented by florescent light bulbs and  humming air conditioners, meaningless social gestures, and people who can’t just say what they really mean.

Neurotypicals, the majority of the world’s population, built this world. Adapting to  “their” ways is hard but it is in my best interest.

I work to fit in. It takes up a lot of my energy. “Normal People” out number us Aspies, but we are out there hiding in the crowd.

Now that I know Autism so intimately, I can pick other Aspies out in a room.We share some silent connection. There is often a nod and a smile. I wonder if the person in front of me is aware of what I can see in them, but out of respect I say nothing.

Discovering that I was Autistic was both freeing and painful. I went through a depression followed by a  roller coaster of emotions as the shock kicked in.

Suddenly all the times when my best had not been good enough were forgivable. The poor little girl inside me was finally embraced.

My childhood had been hard. I did not deserve all of the suffering I went through, but maybe I needed to endure it. All the bullies and villains in my life have helped to make me stronger and wiser, giving me a thick skin that an easy childhood would not have grown.

Unfortunately, it seems to be extremely common for kids on the spectrum to be bullied.

With our without a diagnosis, people seam to be able to “sniff out” our Autism, although they do not know what to call it. They call us weird, awkward, or strange. We are obviously different with our eccentric ways and erratic body movements and alternate communications styles.

Autistic children learn to blend in to avoid being picked on – or at least that’s how it was for me growing up. It is almost instinctual for an Aspie to “chameleon” into society if they grow up diagnosed.

Even now, my instinct still tells me to remain Anonymously Autistic.

“Girls with Autism; flying under the radar” – a new mini guide for schools and child based services. — Barry Carpenter Education

The following was in my news feed today, and as a girl who was missed the title of the original blog post stooped me in my tracks. Please be sure to visit the original poster for more information.

 

To mark World Autism Awareness Day, nasen has launched a new mini – guide highlighting the needs of girls with , or without a diagnosis of Autism. Written by Jo Egerton and Barry Carpenter, with contributions from the Girls with ASC Working Party, the guide is a free download to schools and services. The guide […]

via “Girls with Autism; flying under the radar” – a new mini guide for schools and child based services. — Barry Carpenter Education