Tag Archives: positives

Going Beyond Books to the ‘Whole Different Story’ of Living With Autism – The Mighty

Kerry Magro is an amazing voice in the Autism community. Following in the footsteps of the great Aspie writers and advocates before me I started my blog in order to share my own first hand experiences with Autism.

When I got my diagnosis and as I learned about Autism I quickly was turned off by society’s misconceptions about Autism and the way doctors pathologized us. Sure we have medical conditions and comorbids but the way they described the deficits in our very ways of thinking, often without explaining or focusing on the positive aspects of our Autism, sickened me.

Over the past few months I have been networking with other Aspies online, making virtual connections and encouraging everyone to write speak out and share more. We need to do this. We need to speak for ourselves.

One person cannot change the world but if we all speak up we can make a much bigger impact.

Read the full post here on The Mighty.

We have a saying in the autism community, “It’s easy to read about autism, but it’s a whole different story to live it.”

We are at a crossroads in our community today because there are countless people on the autism spectrum, along with their families and friends, sharing their stories in blogs, journal entries, books, documentaries and so much more. [. . ]

Because of that, I have a favor to ask of everyone reading this article today. The next time you are trying to learn more about autism, consider having people with autism speak about their experiences at your events. While reading about autism is important, listening to the experiences of those who have grown up with autism will give you a whole new outlook on our community. Hear their successes, their challenges, and you will learn about how wide of a spectrum we have out there.

Read the full post here on The Mighty.

#ActuallyAutistic

A message to those with Asperger’s (or Autism)

Am message to those with Asperger’s and Autism – YOU ARE AMAZING!

I am always drawn to people who focus on the positives in live versus being fixated on negatives.

Jenna Lee has a positive message to share with people on the Autism Spectrum. I can take NO credit for her video but please check her out and subscribe for more great content.

Am I Ready for an Autism Diagnosis?

One of the most common emails I get from readers revolves around one question. People reach out to me asking, “should I get my child diagnosed?” or “should I get diagnosed?”

Unfortunately I can not answer that question.

The decision to seek out an Autism diagnosis is a very personal one and you must search inside yourself and look at your own personal circumstances to decide if getting diagnosed is right for you.

Just because you are not ready to get diagnosed today does not mean you will not be ready to get diagnosed in the future.

I am diagnosed because getting a diagnosis eventually was right for me, but when I first discovered my Autism I was not ready to be diagnosed right away.

At first I was in denial and did not understand Autism. I was not ready to talk to a psychologist because I was still lying to myself that my symptoms were non existent or that there was some other explanation for them. Autism seemed so final I was not ready to accept it.

When I started to think about diagnosis I quickly realized that there was a very limited pool of doctors who were qualified or even had experience with adult women. None of the adult Autism doctors I found took insurance. If you do not live in or near a big city you may be taking a long drive to see a doctor.

Getting an adult Autism diagnosis can be expensive. I’ve had people tell me they paid out of pocket $800-$5000 to get diagnosed. Because a lot of the Autism specialists are out of network, insurance companies will often leave you with the fees.

Before I started reading about Autism and talking to other Aspies I had a hard time describing the feelings and things that were going on inside my body. Reading about Autism was like unlocking a key that let me start talking (mostly typing) about what has been going on inside me my entire life.

I have alexithymia. It is part of my Autism that makes it hard to describe my Autism. I have had to teach myself to describe my feelings because if I don’t consciously ask myself how I feel – I don’t know.  Before I started asking myself this question I never would have been able to explain what I was feeling because people always told me how I was feeling growing up.

People told me the wrong things about my feeling sometimes and because of my alexithymia I believed them. Because of this some of my feelings and emotions got confused. I needed to untangle this mess before I could accurately talk to a psychologist about my Autism.

Once I had finally straightened all of those things out I felt like I was ready for an Autism diagnosis.

I journal a lot and that has helped me tremendously in life. People with alexithymia should write. It helps us work out our feelings.

I took a 10 page paper to my psychologist explaining my life story without using any of the Autism terminology. (Doctors seem to be put off by laypeople who sound too scientific. They think we are up to something when we use big words.)

The doctor tested me and I answered her questions honestly. I was extremely nervous the entire time – afraid she would come back with a wrong diagnosis.

After our first meeting I had time to think on her questions and sent her another five page paper further explaining things I could not express face to face.

The way she had asked about stimming had confused me and I had under expressed how much stimming I actually do. (I need questions asked the correct way or I get confused sometimes.)

If you can get your doctor’s email address or bring in typed papers I would STRONGLY recommend doing so. Because I take in information and do not process it right away, sometimes on the spot conversations are impossible. I made a point to mention this to my doctor.

Tell your doctor EVERYTHING that you have trouble with. Make a list.

Autistic burnout (sometimes called Autistic Regression) is a real thing. All of the sudden all of my childhood sensory symptoms were back and worse than ever. It seems like stress and change can have a huge impact on this.

In the end getting a diagnosis was right for me when I started having trouble coping with the real world.

My diagnosis protects me from liability if I ever have a meltdown in public or have sensory problems that cause confusion. It lets me ask for small accommodations at work – like sitting in a quiet spot with natural light.

Now that I am diagnosed I can ask for things – small things that were refused before – and people are supped to give them to me.

I won’t ask for much. I don’t want to take advantage or draw extra attention. More than anything I just want to be comfortable in a world that was not built for me.

 

 

The natural rhythm of stimming: Erin Clemens at TEDxWestChester – Everybody Stims

Wow! I am just floored but this AMAZING performance! WAY TO GO!

I wish I had the text to go along with this poem to paste below but I have a hard time transcribing things word for word and do not want to mangle her beautiful poem!

Everybody stims – not just you and me. 😉

An amazing poem about Autism and Stimming  The natural rhythm of stimming: Erin Clemens at TEDxWestChester via TEDx Talks

Adapting to Your Set of Abilities

I LOVE this kid! I really needed a pep talk today. Thank’s Remrov!

Remrov’s World of Autism shares great perspective about Adapting to Your Set of Abilities in the video below. I can take NO credit for this video please subscribe to Remrov’s channel on YouTube.com for more GREAT videos.

Huffington Post says: Autism Is Really a Super Power

I love beautiful stories, and always feel the need to share when they come across my news feed.

A parent is awakened by the wise words of an Aspie.

“Why can’t you just accept us the way we are? We are not trying to talk you into thinking like us. Or seeing the world like we do. We are not saying your way of thinking and acting is bad. We accept you. So tell me, why can’t you just accept us?”

Perhaps, it is not the “Aspies” who need the healing. Perhaps our children with the autistic label are really here to teach us to stop trying to change people and to just love them.

Read more in the full article by Jema Anderson here.

Autism is Really a Super Power originally appeared on GypsyJema.

 

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.

Autistic Genius and Cure Speak — The Bullshit Fairy

I stumbled across this the other day on one of my favorite blogs. Please check out the original author’s page for more great content.

I love that I’m noticing more people speaking up and against any of talk of a cure for Autism. But please make sure you’re using the right explanation. When you tell people that autism shouldn’t be cured and support your argument by using examples of geniuses that were suspected or confirmed to be autistic, such as Newton, Mozart or […]

via Autistic Genius and Cure Speak — The Bullshit Fairy

Hannah Riedel Shares What She Likes About Being Autistic

Original video by Hannah Riedel on YouTube. I do not own the rights to this video. Hannah is amazing and you should check out and follow her channel on YouTube.

This month, Autism Awareness Month, I am sharing awareness of Autism through the eyes of real Aspies. Hannah shares her stories on YouTube and helps show the world what being on the spectrum is like for her.

 

Limpsfield Grange Girls with Autism

Original video by LimpsfieldGrange1 can be found on YouTube.

This was made by the autistic students at Limpsfield Grange School to raise awareness of girls with autism and was sponsored by vInspired.
This film has certainly raised awareness and ITV have made a one hour documentary about the school, we await the transmission date.
Our students have also written a book ‘M is for Autism’ which is being launched on 1st July by Jessica Kingsley publishers. To pre-order the book on Amazon click on the link http://amzn.to/1HYKOWH