Category Archives: Gastrointestinal / bowel disorders

Autism Level 1: “Requiring support” – What Support?

Doctors and medical professionals are trying to nail down and better categorize Autism. The latest grouping places the entire spectrum into three buckets, depending on the level of support required for the person to function normally in society.

I fall in to the Autism Level 1: “Requiring support” category.

Level 1: “Requiring support”

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Making Sense of the Three Levels of Autism – verywell

So they give me this label and throw me back out into the world, ironically without support. Now what? I am supposed to have this key that allows me to ask for things. My doctor tells me I have protected rights.

At first I am excited, finally I might be able to be more comfortable in my surroundings. I can ask for things and there is a reason besides me being difficult or high maintenance. Finally validated, yes those burning lights DO cause your migraines and avoiding them would be good for you.

What next? Asking for supports turned out to be more difficult than I thought it would be.

This category does not do my life experiences justice. On many levels I can surpass my NT peers but on a social level I often fail. When I put on my masks I can play these amazing characters who are social and confident – but being this person, who they want me to be, kills me. I can do her I can “be normal” but summoning the strength leaves me empty and ill.

Holding up this mask is a necessary evil from time to time, she gets me through my work days and the hard times. She is a character, someone I wish I could be – someone I am forced to be when backed into a corner.

Because of my mask I have peers in both groups, but the NT’s have never felt like peers. Watching, and observing them, trying to memorize their pasterns and mannerisms. Hoping to decode their intentions and feelings. Even reading their faces is difficult for me.

People don’t want to give me support because “I CAN be normal.” I am capable of acting like there is “nothing wrong with me”. (Quotes representing their words NOT mine.)

I can hide my pain, panic, and discomfort, manage to hold myself together just long enough to flee from the public eye. I always do – but I still have sensory issues and meltdowns like many of my ASD peers.

I need regularity and a predictable schedule, I need natural light and calm conditions or my overactive amygdala goes crazy and I get anxiety related illnesses. In my mind I am strong enough to do anything but my body and nerves won’t let me push myself as hard as I used to.

As I get older my senses and sensitivities seem to be getting stronger, and my coping mechanisms and confidence grow. My Autism becomes more and more invisible, despite the disruptive symptoms, growing more intense.

I need help and supports more than ever but asking for them never goes well. Most people don’t believe I’m Autistic, and those who do say “but it’s  not that bad, you are normal.”

Employers don’t understand, they say things like “You only have to deal with florescent lighting three out of the five days a week you work – if you were here more maybe we could give you a window.” “You can’t wear earplugs today, we need you to answer the phones because nobody else is available.” For a job that was originally going to be FULLY REMOTE.

It always comes out like I am being unreasonable, picky, or difficult. At least that is how the opposition to my requests tend to spin things.

My accommodations are simple, let me type vs hand write, don’t give me spoken directions, let me sit in a quiet space (or wear earplugs) with natural light. Don’t ask me to stay late at the last minute if you can avoid it – if you know I may need to stay late tell me in advance. Most importantly please don’t make me go outside when it is cold. I have EXTREME cold sensitivity.

These are the accommodations that I’ve requested from my job – these are the supports that I would like to have because I feel like they are reasonable accommodations, and should be protected under the ADA.

The only support I get is a laptop – because it belongs to me and is essential to do my job (everyone at my work gets this so it’s not really a support). I can take notes on it, keep track of my schedule with it.

It is AMAZING that I get to work remote a couple of days a week. I am happy to have these things but the other items are important to me too and I haven’t been able to get any of them – not even the last one which always leads to meltdown.

Maybe I don’t complain enough. Nobody sees me on my worst days, when I am really struggling because I am PHYSICALLY ill from the stress of the environment and can not leave my house.

I “require supports” but it doesn’t mean I can get them. After all I’m (not always by choice) Anonymously Autistic.

Some days I feel like I am falling apart – if I stay in this world too long it may end me. Nobody can take care of me, I have to keep working.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

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.

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.

Melissa McGlensey – 14 People With Sensory Processing Disorder Describe What It Feels Like – The Mighty

I’ve been really addicted to reading on The Mighty’s website. They have created a positive and supportive webpage filled with great stories and advice for others who live through the struggles that many of us face from day to day.

In the following article, which I can take absolutely NO credit for, Melissa McGlensey of The Mighty, shares how people describe what Sensory Processing Disorder feels like.

“It’s like having the worst hangover you can imagine. The rustle of newspaper can make your ears buzz the same way they would if you were listening to really loud music. People talking can make you cringe because it sounds so loud. Sunlight can literally feel like you are blinded. At my worst, I cannot tolerate any light. It’s like your brain is going to explode because it can’t handle the stimulation. It’s really scary, upsetting and can make one very anxious.” — Hay Green

“All of the sensory input your mind normally tunes out can start to overwhelm your conscious mind. It’s like when you become aware of your blinking and notice every blink for a few seconds, but more extreme. Trying to push past the hyper-awareness of every noise and touch will take away any amount of patience and attention you had for what you were doing. It makes it very hard to interact ‘normally’ because you are so caught up in your own head.” — Elizabeth Engel

“Suddenly everything is too loud, too bright, too much, and you just want to run to a dark, quiet corner to curl up in for hours.” — Sarah Whiting

Please be sure to follow The Mighty on Facebook and check out the full article here.

 

 

 

Kayleigh Kill – How To Live With IBS

More good things from my news feed.

IBS sucks. A topic that is near and dear to my heart (and many Aspies). Kayleigh Kill gives great tips and advice on living with IBS.

Once again I can NOT take credit for this video please check out Kayleigh’s YouTube channel  for more great videos.:)

Kayleigh Kill – Dealing With IBS

More good things from my news feed. A topic that is near and dear to my heart (and many Aspies). Kayleigh Kill talks about her struggles with IBS.

Once again I can NOT take credit for this video please check out Kayleigh’s YouTube channel  for more great videos. 🙂

 

I Said No (To Something I’d Been Looking Forward to)

Every time I publish a blog about being tough and pushing yourself, there are always comments complaining that I am not paying enough attention to self care.

Yes it is possible to practice self care while pushing yourself. I do it every single day.

In the morning, when my sensory issues bother me the most, it is hard for me to get out of bed but I PUSH myself to do it anyway because I know the pain is only temporary. I try to brush my teeth, because doing so is good for me, but if the sensation is too much to handle on any given day I will stop.

I like to touch my limits, but I am very careful to be respectful of them. Pushing too far is not helpful to anyone.

Some things just suck too much to push through, like last night. I awoke to a spinning room and gargling stomach just after two am. Finally, after four hours of vomiting,  I am able to fall asleep.

When I wake up at eight I feel much better but my stomach is still tender and my body weak. I’d been looking forward to going out to lunch with my friend, but I  texted her to reschedule this morning. Today I need to rest and take care of myself. I also need to work (thank goodness I work from home).

Once again pushing myself while being respectful to what my limits are at this moment. I can handle working from home under a pile of blankets right now, but would not be able to handle doing anything in public.

Pushing. Pulling. Finding the right balance and never giving up.

 

 

Aspies – We Need to Toughen Up

I’ve been fairly successful in life because I push myself. I don’t have a big house, fancy car, or name brand things, but our modest home and practical vehicles serve us just fine. We life day to day, paycheck to paycheck, but life is good. We have what we need.

Every day I push myself to my limits – as I write this blog I am struggling through sensory overload just trying to get words out.

When I’ve gone too long without refreshing my batteries I sometimes get sensory overload. Many people now understand that sensory overload is something that many Aspies struggle with, but my sensory overload is a bit different.

All of my senses seem to connect to two parts of my body – my head and my stomach. Most of the time when I am worn down I will get a “headache”. Naps or long hot baths are often an excellent cure when all of my characteristic Aspie anxiety ends up in my head. I can (and do) push past a headache for a few hours if I need to get through my work day, although if I go too long I might cry.

Headaches are horrible but when everything shifts to my stomach I am crippled. every sound, smell, or movement, makes me gag. Sometimes all I cam do is like in bed in a quiet room but not today.

Today I am fighting the swirling nausea. I am choking down the urge to vomit. I’ve got work in five minutes and I’ve got a life to get to. My job lets me work from home fairly often, so on days like this – when I wonder how many hours of my life have been spent with my head in a toilet – are my own little secret. Never let them see you sweat.

Toughen up Aspies – the world doesn’t understand us yet, so we have to fight to fit in.  I am sick but I am pushing myself as hard as I can.