Category Archives: Community

Please Read Autistic Perspectives This Autism Awareness / Acceptance Month

As you may or may not know April is Autism Acceptance / Awareness Month and this year I am putting out a plea that everyone read, share, and encourage anyone talking about Autism to read blogs, watch videos, and learn from actual Autistic people – not big organizations like Autism Speaks.

If you are an Autistic person with something to day, or anyone with something positive to say, I would like to encourage you to write, share your experiences, and be a light of truth in the world. We need more Autistics Speaking and less Autism Speaks (and other organizations about Autism run by Neurotypical people) speaking about Autism.

Finally, thanks to the internet, many of us can no speak (I use that term loosely since some of us prefer to type) for ourselves and it’s time to speak up (and share). If you can’t share publicly, I’ve found anonymous blogging amazing.

Support the online Autism community. Share and connect with other Autistic bloggers – remember some of them may have social anxiety and may not want to meet face to face. It feels good knowing that you are not alone.

Remember there are many diagnosed Autistic people in the world, waiting to be woken up. Many of us did NOT understand Autism until we read the words of other Autistic people. Some day when you google Autism, I dream the works of actual Autistic people will appear on top.

People know about Autism but they don’t understand what it really is or Autistic people.

If you want to learn about Autism, why not go straight to the source? – an Autistic person.

 

#ActuallyAutistic #AutismAwareness #AutismAcceptance #SheCantBeAutistic

Overwhelmed Meltdown to Burn Out – A Poem – Guest Blog

A stone in my throat
Left and right brains beat swiftly
Needles prick my nerves
Tingling nerves in whole teeth
Mind blank out
Numbness envelope whole head
Tears well up turning to
Uncontrollable tears draining my face
Dripping down my chin
Unintentional wrong
Lead into drown into the abyss of sea
Struggling to swim up
Heavy stone body pushing me deeper
As my hand lifting upwards
During daytime
Sudden loss of energy at my hands
Palms lose strength to grip
Noises
Every light footsteps
Pulling of chairs
Shouts
High pitched voices
Distract my focus
Messages
Apps
Notification tones
Breaks my concentration to pieces
Awakened from sleep
Heartbeat rhythms pounding faster
Pulling nerves at my rear skull
Tingling nerves and pulling backwards
In the temple of my head
Explosive pressure in the top of my head
Either in my half-right head
Or in my half-right head
At times squeezing my whole head
As sense of burning in my head
Perspiring in the cold room
Pulsating head temples spreading in whole head
Gasping for breathe
Calling out to Jesus for help
Looking to my Lord for His healing
Crying to Him from inside
– Yoshiko (Diagnosed at age 34)
Please check out Yoshiko’s blog for more great content.

Questioning the Current Autism Spectrum Model – Guest Blog

This is not the first time I’m featuring ‘s work her on my blog. If you missed her last guest post My Meltdown (a Poem) please check it out. My dear friends has some amazing insight and describes in detail her feeling during a meltdown.

 

In this latest, thought provoking, feature  discusses the Autism Spectrum Model. Please check out the original post here. I strongly encourage you to subscribe and follow  for more great content and thought provoking works.

 

(The feature image is MY Aspie quiz result not ‘s)

Color wheel. Concept: Autism Spectrum

Can an autistic person be both high and low functioning?
Is this even the right question to ask?
I’ve heard the term “high-functioning” and “low-functioning” used for autism for nearly two decades, when I was first diagnosed.
I am not offended by the terms, but confused by them.
What is in question? IQ? EQ? verbal and social skills? How about coping with co-morbids and sensory processing disorder?
The autism spectrum is often seen as linear, with low on one end and high on the other.
This is one dimensional and I think, misleading.
I read Rebecca Burgess’ insightful article on The Mighty , illustrating the autism spectrum as a color wheel using a sweet and insightful character named Artie. I highly recommend clicking on the link and reading the link as it will better help you understand what I am about to say.
My IQ has been tested in adulthood twice. Each time, I scored 110, considered a B+ grade. Intellectually, I could say I’m high-functioning.
I can speak, though I sometimes have to stop and think about what I have to say or wind up repeating words while I try and think about what ones I want to use. I do well with writing/typing. It is premeditated. No one is waiting on my response. I can communicate on a deeper, philosophical and emotional level. I could say that I am high functioning verbally and moderately functioning with communication.
When it comes to sensory processing disorder, I don’t know. I don’t have many issues with sight, smell, or taste. I have a little trouble with spatial ability, especially in tight spaces or 90 degree angles. That means I bump into a lot of stuff.
Most of what I call “severe” comes from my auditory processing. I am hearing sounds louder than most.
In early grade school, the people that gave the hearing tests to kids remarked at how I could hear both high and low pitch sounds at very low volume. I screamed when the scratchy records were played. I have hated classical music all of my life due to the sudden changes in pitch and volume. I cannot be around small kids crying. I often played on the edges of the playground as a girl. I couldn’t handle the doorbell until I was in my tween years. Dogs barking, neighborhood fireworks, car horns all caused extreme startle (moro reflex) and automatic meltdowns.
My auditory processing worsened in my teens along with my body’s ability to regulate hot and cold. The only sound that became manageable was the doorbell.
Sensory speaking, the auditory part excludes me from so much of what life entails: socialization, employment, community service, that I would not be exaggerating to call myself severe.
I do not drive a car due to the fact my mind cannot process too much stimuli at one time.
I have always been a slow learner. Repetition was and is the only key to retaining information. Yet, I wouldn’t qualify as “intellectually disabled”, because I do eventually get the concept-unless it’s math! 😉
I think the answer isn’t the labels. It is a problem in how we perceive the one-dimensional model. It is outdated
.

My Meltdown – A Poem – Guest Blog

This poem comes from a long term reader, fellow blogger, and dear friend. I am honored to share with you a work by the one and only Allison M. Kramer of the Through 1 Filter  blog.

Thank you for sharing such an intimate moment. People need to understand meltdowns. These conversations are important.

 

My meltdown is

Echoed in my screaming
Adrenaline is racing like napalm through my veins
Moro reflex punching my gut over and over
Reliving the sensory overload on a loop

I’m drowning without being in water
and I have to go to bed for 2 days

Sometimes it brings red and blue flashing lights on a squad car 
Handcuffs chewing into my wrists
Lots of shouting and grabbing
Strapped to a backboard while my skin turns purple and black

Locked up, drugged up
Being punished for something I cannot control
It isn’t a conscience choice I’ve made
To disrupt my life or yours

It so happened that
A dog was barking-
A child was screaming-
Someone set off a firecracker-
And I couldn’t process the information fast enough
To remain in control of my executive functioning

The threat of sensory overload
hangs pregnant, like a cumulonimbus cloud

I need a safe place and safe people- now and until I die
To successfully process what life heaps upon me

Will you help me to make this a reality? I cannot do it alone, behind a computer detached from any notion of community. I don’t want my life story to end in a jail cell, nursing home or alley. 

 

Allison M. Kramer
Author:Through 1 Filter

 

 

Medical Cannabis & Autism – You Asked My Opinion (The Blog I’ve Been Avoiding)

Over the past year that I’ve had my blog people have been emailing asking for my opinion on the use of cannabis or marijuana as a possible treatment for Autism.

To be perfectly honest with you, all of my readers, I have been avoiding this topic.

Here is why – I don’t have first hand experience with this so I don’t feel like an authority on the subject. I don’t live in a state that allows Autism to be listed as a qualifying medical condition so this option is not available to me. I need to write about what I know and I don’t know enough about this.

What I would like to share is that parents have reached out to me to let me know that they have had some amazing results. Other parents email to ask if I know about this treatment but all I can say is this – I am not a doctor and cannot give medical advice.

So once again, I am not a doctor and can not give medical advice so please do not take anything I say as such.

If you want my opinion on medical marijuana and Autism all you have to do is search “cannabis autism” on YouTube.

Watch the videos, especially the ones with severely affected Autistic children.

If you can not stop crying while watching those videos than you know exactly my position on this issue.

I am deeply troubled that there might be people missing out on one thing that might help ease extreme suffering, especially when many drastic things have already been tried.

Those videos may hook you in and after that you may find yourself watching the videos about medical cannabis and seizures. I can’t watch these videos either because I know many children with severe seizure disorders, who are not helped by mainstream medications, die at a young age.

I am also saddened by medical refugees and people stuck without access.

I can’t watch these videos any more. The truth in them is so penetrating that it makes me physically ill. People say Autistic people don’t feel things but as an adult I feel them more deeply than a lot of people. It is beautiful and painful all at the same time.

That is my opinion on medical cannabis for Autism – I am heart broken.

Heart broken about all the suffering that’s happened over the years in relation to this plant for no good reason. People are sick, dying, in prison, families torn apart. There has to be a better answer.

Can I advocate for medical marijuana as an Autism treatment? I don’t know. I am not a scientist or a doctor.

What I can advocate is everyone doing their own independent research. There is still a lot we do not know about this plant. One thing I can say is it doesn’t seem to be as dangerous as people wanted us to believe back when they made it illegal.

I know cigarettes kill people and alcohol is much worse but is a big part of our culture.

Just facts. That’s all I’ve got since I can’t make this one more personal.

Happy New Year!

To you my dear readers and friends. I wish you start this new year eagerly. I hope you find the courage necessary to chase your dreams. Don’t let the doubters get you down.

You are amazing and I hope you know this.

That is my new years wish for you.

 

With love,

Anna

Mental Health & Chronic Illness – Things People Don’t Understand

Toughen up – that phrase makes my arm hairs stand on end… my family members said it a lot, so did my teachers. Stop calling me weak – on one hand I hate being told that.  Regardless, coming from my mother it did me good and helped me become the person I am today.

The other one that REALLY gets me is “you’re not trying hard enough”. This is the worst thing you could ever say to someone who is doing there honest best. It’s soul crushing. It doesn’t matter your intentions – I hear “your best is not good enough“.

Certain simple things like timing in conversation trip me up. My brain is working overdrive but still I make simple mistakes. Because I can be extremely skilled at complex tasks people say things like – “you are too smart for this” & “you are not trying hard enough”.

On the inside I am dying because my best is perceived as laziness. I’m working so hard –Not trying? They can not comprehend how difficult this is for me.

People assume I am being rude and I rub them the wrong way. I’ve been told I can be perceived as standoffish and distant – not really what I’m going for. It keeps people away.

I am very isolated because of my limited social skills. My awareness of my social impairments has helped me to develope severe Social Anxiety.

I don’t go out, I don’t socialize – I get more than enough human interaction (the wrong, over stimulating, kind) at work. Other than going to the office, I never go anywhere without my husband.  He is my rock and is wonderful to me. He seems to pick up on the things that I miss. We compliment each other nicely.

I don’t bond with many people, but the people who I do bond with have my loyalty till the end. When you can’t read people and tend to be gullible you have to guard your inner circle. I don’t want to let a snake in the hen house.

My co-workers are all wonderful but unfortunately we are never on the same page. They go out, they dance, they drink (a LOT), they get loud and crazy. None of that appeals to me one bit. They care about brands and dinners at expensive restaurants – I feel like these things are a waste of money. I don’t know how to talk to them because we have nothing in common.

My thoughts are on my mortgage, family, my current obsession, and saving for days when I may no longer be able to work. I can’t throw money away like they do – I don’t have money to waste.

The risk of loosing work is high when you have a chronic illness. If you use too many sick days your boss will fire you. I am healthy enough to work right now but I don’t know if this will always be the case.

There was a time years ago when I was sick 3 days a week – the beast. I fear it’s return more than anything.

I am “disabled” but not on any disability. I don’t have supports other than my husband’s care. I’ve been disabled to the point where I really could not live a good life before – it was horrible and I never want to do it again.

If I get sick I will lose my job and my home. More than anything my home is my safe place. Living in apartments was hell with my sensory sensitivities. Maintenance men insisting they have to fix something are not something I can deal with on high sensory days – neither are loud neighbors.

Having my own place is essential to my mental health and having a job is essential to having a home.

I also spend more out of my own pocket for medical expenses than most people. Almost every doctor I need to see is always a specialist who is “out of network”. I don’t get all the recommended medical things done because the costs have gotten ridiculous.

I have to eat organic and gluten free because the chemicals and gluten make my stomach violently ill. I am chemically sensitive – something that is common in people with AS that I speak to.

Money is always tight but we are getting by. I am trying my hardest to keep everything in balance.

All I can do is take care of myself and hope for the best.

I LOVE MY READERS!

I Just have to say that I LOVE my readers! I have the best readers, such an engaged audience. You always supply positive and enlightening conversations. I am grateful for each and every one of you – even those of you who don’t comment.

Please – join in on the conversation!

Thank you all so much for your continued support. Without the readers this blog is nothing.

With Love,

“Anna”

Autism & Employment – Could You Stand the Rejection? – The National Autistic Society

“Thousands of Autistic people are shut out of employment. Their skills are going to waste” 

Do I need to say anything else? This is a HUGE problem in our community.

I was very fortunate to have friends get me into my first few jobs as I built my resume. Then I learned in a management class what to look for when interviewing people – so I became the person you want to meet in an interview (at lest in the interview).

My “interview character” is a mask I wear. It is a fake me I call on to get jobs – and she is GOOD.

Nothing makes my anxiety pump more than a one on one conversation with a stranger.

Tip – if your armpits sweat when your are nervous, like mine do EVERY time I have to speak in a meeting – cover them.

Inside I may be freaking out, but my alter ego takes care of the interview. There have been times when I have over-promised and gotten myself in over my head but getting in the door is always the hardest part. This is a skill i learned and it took study and effort.

So many Aspies, who have talents and gifts to offer the world, cannot get jobs due to sensory issues and trouble in social situations. The world needs us but is unintentionally shutting us out.

Please watch the powerful video from the The National Autistic Society – Could You Stand the Rejection?

I can take NO credit for the video but this topic needs to be discussed.

Remrov – Talks About the Spoon Analogy Regarding Energy

The Spoon Theory is an amazing way to explain the energy drain that many Autistic people feel. If I get too low in Spoons I get VERY sick so it is important for me to conserve my energy and avoid too many activities that take away the most spoons.

Some activities take more out of me than others, even enjoyable activities can be taxing on my spoon supply. Socializing and having a full time job uses almost all of my spoons most days. Sitting under florescent lights or being in a loud noisy environment slowly drains my spoons as well.

I limit my social activities and don’t get out on days that I go to work since these take up so much energy.

Also I need time to “regather my spoons”. After I get worn down it takes time to build my energy levels back up. It is extremely important that I have quiet time to recover or I can get stuck in a repeated meltdown / burnout loop.