Category Archives: IBS

What IS Autism – From An Autistic’s Perspective

A reader asked if I had a blog post that described what Autism is. I started to say that this entire blog gives great first hand information from Autistic people.

Our experience can not really be summed up in a one page post. There are a lot of things that make us different.

First I want to say that each and every Autistic person experiences the world in a very different way so what I state below may not be true for everyone. I am going to go over some generalizations that are true for me, also taking in mind what has been shared with my by my amazing readers.

We tend to struggle with spoken communication but many of us do VERY well behind a keyboard.  We can have tricky short-term / working memories but a LOT of us have long-term memories that are FOREVER. We need time to process and go over things but once we understand something it stays in our minds (or that is how it is for me). Time to organize and prepare thoughts is essential for me because of this.

Many of us have sensory sensitivities. Bright lighting can cause chronic migraines and other illnesses. I can hear everything which is unpleasant because I can’t tune individual things out. My hearing is essentially so sensitive that I can’t hear conversations in busy rooms. Not to mention the distraction of every small noise seeming VERY loud. Clothing can be itchy and irritating. Tags and socks are the worst and certain grooming activities can be extremely uncomfortable. Getting a mani-pedi is NOT relaxing for me. Even getting a massage is difficult because of another person touching me can make me want to jump up and run.

I have a hard time sitting still. Our bodies (and minds) crave constant motion. I am always playing with something rocking in my chair, humming or singing. This is called stimming. It is a regulatory behavior and helps with sensory input, relaxation, and focus. I also speak to myself out loud a lot. These things “normal people” don’t tend to accept but we REALLY need them to.

Many Autistic people have comorbid conditions – other illnesses with their Autism. Some examples are insomnia, epilepsy, IBS, OCD, anxiety, depression, migraines, apraxia, ataxia, sensory processing disorder, the list goes on. These, in my mind, are not Autism but rather Autism related conditions. They differ from person to person.

Autistic people can be extremely intelligent but learning disabilities and intellectual disabilities can also happen with Autism. Just like “normal people” our IQ’s are all over the place. People often assume Autistic people all have intellectual disabilities. I prefer to think of it as a difference. Also EVEN non-verbal (non-speaking) Autistic people can fall into the “high IQ” category. Never assume an Autistic person cant’ understand you.

I can speak but am not as good at it as most “normal people” but there are a lot of Autistic people who have apraxia of speech. This means they may have all the words and thoughts inside BUT the mouth pieces don’t move. For some reason the brain can’t tell the mouth and related parts how to work. Some children speak late and others never speak. I had no speech delay.

Dyslexia and Hyperlexia are also common in Autism. I am Hyperlexic.

Our brains tend to be spiky. We can be far above average in some pretty random areas, art, math, music, memorizing, writing, or not. At the same time our deficits in the areas that don’t develop as fully can be perplexing to the word’s general population.

For example – my conversational skills are so limited that I can NOT tell when my turn to talk is. My solution? Don’t talk. Before I stopped talking people kept calling me rude but I was doing my best. I never wanted to be rude. I’ve become more quiet and contemplative – more of an observer than I used to be. Actually this has been an improvement.

Autism is invisible. Unless I am stimming wildly in a chair or flapping my arms wildly you would not see my Autism – and these are things I do in private. Any time I try to share with someone that I am Autistic, a 34 year old woman who appears to have it together, I am dismissed.

I try to share mostly when I am looking for some understanding about an accommodation that I am about to ask for. I ask for little things – natural light, a quiet spot, to be able to take notes on a laptop.

Often people tell me I don’t “need” these things and that I am making excuses for myself. I just want to do my best. This is the hard part, when you ask for help and people say “nobody else will have that” or “it’s not fair to play favorites” even better “you already have it pretty good”.

Summing it up in a blog comment or post is impossible. Please dear readers, I ask that you provide your own experience in the comments so that the world may someday redefine wheat Autism is from OUR perspective.

 

With love,

Anonymously Autistic

“Anna”

 

#ActuallyAutistic #InvisibleAutism #AutismAwareness #SheCantBeAutistc #AnonymouslyAutistic

 

 

Basic Accommodations – I’m Not Disabled By My Autism, I’m Disabled By Unaccommodating People

In an earlier post titled Autism is Not My Disability I said

“Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function. The disability is society’s misunderstanding of Autistic people.”

Although I still agree with my previous statement, I’ve been rethinking this title laity and feel a strong urge to elaborate.

First I want to clarify that there are parts of Autism that are disabling.

We can have mental disabilities, epilepsy, IBS, Anxiety attacks, chronic insomnia, extreme sensory sensitivities, and more. In my mind these things are not Autism – because they differ so widely in all of us. I consider these commodities are unfortunate side effects that Autistic people encounter (too often).

These things ARE true disabilities and are often invisible – so when I say Autism is not a disability, I mean Autism as a way of thinking in itself is not a disability. This does not mean many Autistic people are not disabled.

I wish it weren’t true, but many of us are.

Personally, I am not sure if chronic illness will eventually leave me unemployed and unemployable. It is a constant fear as I scramble to get my health under control. Doctors are apathetic and if you’ve learned to act “normal” people doubt your diagnosis every time you mention it.

There are certain things I need help with, some simple accommodations that make my life easier. In work and in my personal life I tend to ask for the following (although people accuse me of being difficult) :

Sit somewhere quiet. At work I may wear headphones with music or ear plugs. Working from home is also a great option. My ears are so sensitive they pick up everything. I can’t focus on one conversation or catch all the words in a loud busy room. I like calm restaurants or off peak times.

Sit somewhere with the gentle lighting. Natural light without glares and certain soft artificial light is something I need. Modern office light is the worst. The wrong lighting or lots of glares makes me feel sick and hurts my eyes and brain. If I can’t escape I may put shades on or wear a hat indoors.

Ask for or make a plan. I like to know what’s happening and am honest about not enjoying surprises. I also need to know when things will end. Sometimes I may stay choose to late, if not, having an end time helps me to relax.

Say no to people. I am not a social person and can’t take a lot of going out. Socializing drains me like nothing else. Now that I work full time I have a hard time going out more than a few times a month. I say no to people more than they are used to but my health is important to me.

Try to get everything in writing. I have a hard time following verbal directions. Autism does impair some of my face to face communication skills. I also have impaired sort term memory and executive functioning.

When I ask for someone to put something in writing for me, it is one of the most important accommodation that I ask for. My reading level is FAR above what I can take in though speech. This helps ensure I don’t skip any important details.

Special treatment. It’s not fair for you to get special treatment.

If I am lucky people oblige me, however I get a lot of push back sometimes.

I feel like these accommodations are reasonable. When I have these things I am able to function at an optimal level. Without them I end up struggling to keep up with the basics. If you give me just a little I can go far.

I think differently and go about things in a different way. On my own this has never been a problem. My problems only appear when other people insist upon me doing things their way, insisting that I do things like everybody else.

They can’t see my disability and think I am asking for an easy way out.

They can’t understand how badly I need to do things my way and don’t see how much I struggle without accommodations. They are hard to get especially in the work place.

All I want is to do my best.

My Autism is not my disability – unaccommodating people are.

 

 

 

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.

Oops – I’ve Lost Another Friend

Oops I’ve lost another friend

I thought that we were close

But you’ve got needs

that I can’t fill

You want more from me than I can give

I leave you feeling empty

You tell me friends hang out more

When my social anxiety gets the best of me

and I would cancel

at first you calmed to understand

Eventually you got tired of waiting

telling me you wanted more

I know now

and it breaks my heart

that I must let you go

Goodbye my friend of many years

My friend who cannot understand

I hate to see you go

and will miss you when you’re gone

but your no good for me

when you hurt me so

your words cut deep

we cannot repair

I’m afraid you’ve got to go

A poem about losing friends.

Being Autistic has made it more difficult for me to make friends. I don’t bond with everyone but deeply care about the friends I have. Loosing a friendship is like burying a friend.

It is a great and painful loss but if the relationship is not mutually beneficial than I can see no point.

I have Social Anxiety Disorder – sometimes I cancel plans but it doesn’t mean I did not want to hang out. My fiends feel unwanted and one by one most of them have drifted away.

People don’t understand and I can’t blame them for that – doesn’t mean it does not sting whenever it happens.

 

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.

What Causes Autism? Brain Injury?

It’s genetic – Looking around at my closest male and female relatives, Autistic traits can be noticed in all of them. My autism was obvious from childhood. I have video footage starting the day I came home from the hospital through my teenage years. It is clear to me that in my own case – Autism is genetic.

I recently have been reading more and more information online suggesting that autistic children may have weakened blood brain barriers and be more supportable to brain injuries.

Someone else, who I’ve known for years, has an Autistic son. He suffered a sudden mystery illness after being vaccinated and never recovered. The child has compromised mental function and appears to have had a negative reaction to the vaccine.

Regarding the case above – I know the extended family of the woman and the boy very well, and they are much like my own family little traces of Autistic tendencies everywhere.

My personal feelings regarding what happened to the boy are different from his mother’s.

She feels his Autism was caused entirely by the vaccine and I strongly believe the tendencies for Autism would have eventually been discovered regardless.

She claims there were no signs of Autism before her son came down with the sudden illness – and I have to believe that she is telling the truth as she sees it.

I can’t help but  see autism in the mother, the grandmother, and the uncles who I also know well.

I have a theory that Autistic kids are more susceptible to chemical brain injury – I would LOVE for science to catch up and prove me right. The illnesses that accompany Autism are the problem – not the Autism itself. Our immune systems are weakened and we need to be protected. We are fragile flowers.

We are still trying to answer what causes Autism, it might be a while before we find all the answers.

For now I will quote Autism Speaks – a polarizing organization that has not yet gained my trust (but changing their mission statement earlier this fall was a start) – on what science has to say.

 

What Causes Autism?

Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

Autism Speaks – full article here.

 

 

 

Coming Out Autistic – When You Don’t Believe

Coming out Autistic is hard. It’s even harder when the person in front of you doesn’t believe a word you are saying.

People who’ve known me for years say things like –

“Why are you complaining all of the sudden? You never used to talk about Autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.” 

 

These people are less than half right.

Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people nobody believed me – so I stopped.

When I was in school I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick to. The doctors told my mother that there was no physical reason for my sensory complaints and that I was making them up to get out of school.

There were no accommodations for me growing up so I spent my life sick, in pain and discomfort.

My mother told me I had to go to school or she would go to jail, not wanting to loose my mother, I sucked it up and went.

Side note – remember Aspies take things literally. Be very careful what you say to your children.

 

I suffered in silence for thirty years.

I’ve always been different, but my mother told me never to reveal your flaws – so I learned to hide my confusion and executive functioning problems from the world.

Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard, was what eventually lead me to an Autistic Burnout (Autistic Regression).

Finally as my sensory symptoms intensified, after years of confusion and being told that “everything was in my head”, at the age of 30, I received a formal Autism diagnosis.

Am I happy to have a disability?

No. I was chronically ill my entire life and everyone always told me I was faking it. I am happy that FINALLY a doctor has an answer for me. After years of searching I know WHY I am always sick.  I am happy that I finally have the answers and information needed to take care of myself.

I am happy to know that my “illness” is not something more serious or terminal. Part of me used to think that I might have some sort of cancer or rare disease that might kill me some day. This thought is gone now.

They are also correct about my obsession with Autism being recent. 

I was Anonymously Autistic for thirty years and didn’t even know it.

I never spoke about Autism before learning about Autism. Is that really so strange?

Until accidentally stumbling across Dr. Temple Grandin (my hero) I didn’t know what Autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about Autism.

Here is where people always get things wrong. 

I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.

I’m not trying to complain when I point out a sensory trigger. 

Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”

I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain”.

I am reminded of my mother’s words – “You’re not dying – get up!”

They don’t know about the secret headaches and physical pain caused by certain sensory experiences – if I try to tell them they accuse me of complaining or exaggerating.

I’ve been getting up and acting like everything is okay for a long time now. It’s tiresome but apparently I’m so good at passing that even some of my closest friends can’t see (and refuse to believe in) my Autism.

It hurts that they think I am lying or crazy, but I try to remind myself that they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.

Do I show them more or let them go? I get the feeling they don’t care to know more.

Luckily my immediate family has been very supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.

Coming out Autistic is hard for a multitude of reasons – people don’t believe you, people don’t know what Autism is, people think Autism can be cured, people think Autism only affects children, the list goes on and on.

Hands down the worst thing about coming out is when you try to come out to someone close to you and they basically tell you – “No, you’re making this up. There is nothing wrong with you.”

Cut down like a tree.

When you don’t believe it hurts so bad that I want to stop sharing but I can’t because the world needs to know – for all the other Anonymously Autistic people in the world.

#AnonymouslyAutistic #ActuallyAutistic #SheCantBeAutistic

 

 

The Meltdown

Sometimes it creeps on slowly

I see it coming hours in advance

Other days it hits me like a freight train

I feel like I am always holding off The Beast

Swimming through mental sludge

My head is pounding and my eyes burn

Out in the world I am unprotected

I need to find a private space

Being alone is the only cure

Finally I am home

Worn down and empty

I find myself in bed early

Rolled tightly in blankets

Soothed by darkness

Maybe if I sleep the monster will leave

Sometimes rest is all I need

There are days where nothing can save me

When all my senses begin to run together

Sounds and sights become dizzying sensations

I cannot move but I must

The room is spinning so fast

I make it to the bathroom just in time

as motion sickness overtakes me

I am paralyzed by an indescribable pain

My body and mind stop working together

Getting back to my bed is challenging

So I stay on the floor in my bathroom

Curled into a tight ball

Hiding under a pile of towels

Thinking is impossible

Nothing works

The monster is in control

Total meltdown

Pain and confusion

The Monster has me

Nothing left to do but wait it out

A poem about an Autistic Meltdown.

 

The Problem With Being Called ‘Strong’ for Not Expressing Your Pain

Every morning I open my laptop and respond to blog comments. Once I’ve responded to and approved everything on my own blog, I open a new tab and navigate to The Mighty.com.

A great way to start my day, I always look forward to the positive messages and uplifting words of some of the only people in the world who seem to understand certain aspects of my life. We have the same struggles, fears, and problems.

This morning I stumbled across an amazing post by Morgan McCardell, contributor to the General Chronic Illness section of The Mighty. Her words describing pain and emotions that I have felt so many times.

Society doesn’t respond well to weakness and I don’t respond well to pity so I often keep my struggles to myself. It is also very difficult to be so vulnerable when you are sick or have something that you cannot do for yourself.

We hide when we are struggling and people don’t normally get to see us when we are at our worst. People call us strong but in reality we my just be surviving or doing what we have to do to get by.

I do think I am strong and I realize I fight a lot of obstacles but the people who make these comments not normally people who understand what I actually go through.

Somehow it has less of a sting when someone reading my blog tells me I am strong or when someone who has seen me at my worst says it. At least these people actually know what strength I have.

Please check out the full post here. Below is just a small snip-it of her powerful post.

I take great issue with the sentiment that those who do not express their pain and sadness should be glorified for their strength. You’ve likely seen it in obituaries: “She fought a brave battle, and never complained once” or “She was always positive even through the pain.” The truth is, it is much more likely that they weren’t always positive. Whether it be pride, or simply not wanting to inconvenience anyone, it is much, much more likely that they just didn’t show their pain to you or never showed it to anyone at all. We all have dark days and we all need help and reassurance once in a while when we are struggling. To express that does not denote weakness. I feel that true strength is the ability to let yourself cry when you need to, to put pride aside and ask for help when you need it, and to let the ones who love you help pick you back up when you’ve fallen. I will not be ashamed of that, nor will I apologize for “feeling sorry for myself” when I need to. I will not apologize for being human.

Please check out the full post here.

Melissa McGlensey – The Mighty – 22 Truths People Affected by Sensory Processing Disorder Wish Others Understood

Melissa McGlensey wrights about Sensory Processing Disorder on The Mighty.

On a bad day, my sensory issues can be the worst part of my life. What makes it even harder is the fact that nobody, unless they have SPD, can possibly understand the pain and discomfort that I am going through when a full blown attack is happening.

People think I am being dramatic, whining, or complaining… so I keep things to myself. The truth is, some days I feel worse than others. Some days my symptoms go completely unnoticed but when they are bad they can not be ignored.

I can take ZERO credit for the following quotes. Please see the full article here on The Mighty.

“I do not complain about bright lights, smells, tastes, rough touch, etc., just to annoy others. I am overwhelmed by sensations and am learning how to process differently. Until then, please be patient with me.” — Sandra Cusack

“When I need to go reset, it’s not because I’m being dramatic. To be in a room of people is constant stress on my mind and body to make sense of an environment that makes simple sense to you. Sounds, smells, lights, brushes against people, all of it had to be decoded and reiterated into a language my brain can understand, and there can’t be more input when I’m trying to do that. I need a space free from all stimuli to give my brain the break it needs to process things… Just give me a minute to myself. And please don’t interrupt it.” — Hailey Remigio

“Just because I look fine on the outside doesn’t mean I’m not struggling inside… Even the professionals I take my kids to assume so much. They do things like talk to me in a crowded waiting room. They assume just because I’m an adult I’ve figured out how to handle my sensory issues. I didn’t know what SPD was for most of my life.” — Holly Newt