Tag Archives: chronic illness

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

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.

 

 

 

Trying to Explain Autistic Adults at the Dentist – We Blend In Better Than Autistic Children

I had a dental appointment this morning, a semiannual cleaning that takes a lot out of me due to my sensory sensitivities.

Up until this point I’d never fully disclosed my Autism to my dentist or the hygienist who cleans my mouth. In the past I’ve mentioned light sensitivities, high pain tolerances, and poor body temperature regulation (partial disclosure) but never used the word Autism.

Today, because part of my new years mission is to spread more Autism awareness, I told my secret.

I should be used to the responses people give my by now, but for some reason they always catch me off guard – “I never would have guessed. We have Autism in our family – nephews (young people). You hide it well.”

Even more I hated myself for my response to the comment. All I could think to say as I stood dumbfounded was “thank you” and I hated myself for even speaking those words.

My Autism is not something that I want to hide. I am not ashamed of being Autistic because I know that Autism makes me who I am.

I continued to share that “as I’ve grown up there are tricks that I’ve picked up along the way, allowing me to blend in and more easily manage in society. I have worked very hard to get to where I am now.”

In my mind we shared some understanding in that moment. I like to think that I was not dismissed as misdiagnosed or lying because often people don’t believe me when I tell them I’m Autistic.

There was so much more that I wanted to tell – how I meditate constantly and practice mindfulness to keep my anxiety under control. I wanted to share that me passing is a lot of work.

So much to say when you have metal tools in your mouth. There was no good time for further elaboration but I hoped for understanding of how hard it was for me to sit still while they probed around in my mouth.

Finally, as an adult, I am able to force myself (with great mental effort) to sit still through the entire dental cleaning.

At first glance it may appear as if I am calm and still but the reality is something far different.

My heart is racing and my hearing is fuzzy. As I lay flat on the dental chair my body is tense and I am pressing myself down with every muscle in my body, attempting to melt into the chair so I do not run away.

I wear sunglasses to block out the light and ear plugs to dampen the drills but still the excessive unpleasant physical contact is an assault to my senses.

Somehow I always manage to push through these draining experiences.

By the time I get home my head is pounding and my mind is fuzzy.

It is still very difficult but now as an Autistic adult I am finally able to get through an ordeal that was nearly intolerable as an Autistic child.

I am grateful for the small accomplishments. Learning to sit still while people touch me took  years of practice, determination, and hard work.

 

#ActuallyAutistic #SheCantBeAutistic #AnonymouslyAutistic #InvisibleAutism #InvisibleDisability

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.

Working Full Time (Is Killing Me) – Autism at Work

Now that I know the reason for my social impairments and shortcomings, I am more accepting of my own failures.

Before I knew I was Autistic, I remember crying alone wondering why I could not just figure out the nuances of conversation. Why even when I thought I was doing everything right to have a polite conversation, people told me I still spoke out of turn and repeated myself .

The way I relate to others is somehow of-putting. I tend to ramble and turn conversations back onto myself. People think I don’t care about what they have to say but really, I’m just trying to say – “I understand.”

In fact I am also much more aware of my own failures now – this was hard on my self esteem when I was first diagnosed. Suddenly all of my flaws were illuminated, in my face, and so official.

I realized that I could not read faces, realized how much I was struggling just for timing in conversations, realized that auditory processing delays make face to face interactions stressful and overstimulating.

I was pushing myself to the point of sickness trying to keep up with the social demands of my busy work place. The things that most people find rewarding, busy events and parties, are not fun to me. I don’t want to go out and drink and I don’t feel relaxed around my coworkers.

All that fun was not in the job description and it was taking a toll on me.

Happy hours, networking events, international travel, restaurant openings, celebrities, private screenings of movies that the public can’t see yet – my job is pretty amazing.

The truth is, I rather not have all the extra perks that my job “offers”. I’ve learned that the politics are complex and if you don’t attend certain things your boss feels like you are ungrateful. I try to attend the very minimum, but even that is pushing it for me.

I am surviving in energy conservation mode. I have no social life other than the one my office creates.

I’ve stopped hanging out with my real friends because at the end of the work week I am dead. I have no energy or desire to socialize, burnt up and spent, nothing left for the people who matter most to me.

But I am living the dream right? I have my dream job and it seems to be killing me.

I need more down time than most people, and the more social I am the more down time I need. It is hard for someone running on spoons to have a full time job, but quitting is never my option.

I have gratitude for my job, because TOO many Aspies are unemployed. I am thankful every day for my very difficult and exciting job – even on the worst days.

“You’re Obsessed with Autism”

“You’re obsessed with your Autism. Ever since your diagnosis you talk about it all the time. You never spoke about these problems before.”

Keep in mind NONE of these people know about my blog. Imagine how obsessed they would think I was if they knew I had an Autism blog and contributed to a popular disability website. These are things that certain people will never understand.

I want to help. People should not have to suffer in silence.

I never know what to say in face to face conversations with friends and loved ones who doubt.

Finally after years of suffering in silence I am talking, speaking up and trying to speak out. Face to face the words never come.

My entire life I was “sick”. Doctors could not find anything physically wrong with me. They told my mother it was all in my head and that I needed to toughen up.

Finally I have an answer. The truth – and it feels liberating.

As a child I was tired of being looked at like I was crazy and told that I complained too much so I stopped complaining.  Nobody believed me anyway.

Just because I stopped talking about my discomfort does not mean it went away.

I still lived with constant headaches, nausea, and even physical pain – the more severe symptoms of my Sensory Processing Disorder. Before I would suffer, pretending everything was alright, smiling through the pain.

“You used to be such a positive person.”

Now that I advocate for myself and speak up with I am uncomfortable or not feeling well I am a “negative person”.

Why does this stigma still exist? I’m not trying to be negative, I’m sharing my world with you or asking for help.

Nobody wants to know how you are really feeling.

People have accused me of using my diagnosis to get out of things, but really the things I try to get away from now are things that have caused me pain my entire life.

People can be down right nasty when you try to paint Autism in a positive light. They feel as if you are dismissing their struggle, but I feel like there is already enough information on the internet talking about all the hardships and problems. If you don’t know where to look that is all you’ll find.

My diagnosis is a little paper that says “You’re not crazy – yes your body does have a mind of it’s own. Love yourself.” I chose not to get hung up on the negative and try to always focus on the positive.

“Anna is an exceptionally bright woman on the Autism Spectrum she suffers from [. . .] ” Let’s not worry about the list that comes next. I can’t live my life drowning in negativity.

I’m not a special snowflake. I am just a girl trying to live an authentic life while loving and accepting herself – Autism and all.

 

Autistic Genius – Equity NOT Equatlity

Asking for accommodation can be difficult.

I struggle with this personally because of my difficulty verbalizing things regarding my needs in face to face conversations. If I am asking for an accommodation, than I am probably already fairly uncomfortable.

If I am able to explain what I need PLEASE just take my word for it even if you don’t understand the reason behind my request. When people have too many questions about why I need what I need or treat me with skepticism I tend freeze up.

I don’t want special treatment, I just want to be as comfortable as I can be in a world that really was not built for me.

I really enjoy the videos from Autistic Genius on YouTube. Please check out his channel and subscribe for  more great content. I can take NO credit for the video below.

Dear Beautiful – A Letter to the Newly Diagnosed (Autistic)

Dear Beautiful,

Congratulations on finally discovering the truth. I just want to remind you that you are amazing.

I hope your doctor sat you down and told you that this diagnosis does not make you broken. Mine pointed out that a lot of my skills come from being Autistic.

May this information bring you more self compassion, as you learn to respect your limits. Don’t be afraid to ask for help. Don’t be afraid to do things for yourself. Make your own miracles.

Autism is forever. Accepting this fact will bring you peace of mind. Be empowered by this information. Don’t let it break you.

You can let the finality of this diagnosis knock you down. You can get torn up over why it took so long o find the truth OR you can get up and own it.

Focus on and grow your strengths. Do what you love with all your heart even if it doesn’t make you money. If you can turn something you love into a career – even better.

Learn your weaknesses but don’t fixate on what you can’t do. Have self compassion, be kind to yourself and respect your limits.

Read articles by other positive and encouraging Aspies online. The  online Autistic community is amazing and supportive. If you have a question, somebody out there has your answer.

The world needs all kinds of minds. We are unique, but not unlike Einstein, Tesla, Mozart, and many other artists and thinkers who came before us.

Most of all – don’t be ashamed of who you are. Think different – it is your greatest strength.

With Love,

“Anna”

Anonymously Autistic

 

 

Autism Speaks Changes Mission – No Longer Seeking Cure

I’ve had negative feelings towards the organization Autism Speaks for a long time.

The were like a large and mighty enemy, spreading cure culture and promoting Autistic genocide.

They wanted to find a way to prevent Autistic children from being born (according to their mission statement) and that made me VERY uncomfortable.

 

In a 2006 press release, Autism Speaks stated as its goal “to accelerate and fund biomedical research into the causes,prevention, treatments and cure for autism spectrum disorders; to increase awareness of the disorder; and to improve the quality of life of affected individuals and their families. [. . .]
We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder.”

Autism Speaks was a giant and I was just one little voice desperately screaming the only truths I knew through a keyboard.

My voice is small, but I was not alone.

We spoke out, we screamed, we made videos. Autistic people all over the world spoke up and together our voice was large.

Maybe our voices grew loud enough that the giant finally heard us – or at least that is the happy story that I’m telling myself.

The truth is I don’t have an insider’s point of view from Autism Speaks, so I can’t possibly know the reason.

At this point does the reason really matter?

The new version, which the nonprofit says has been in the works since at least late last year, takes a decidedly different tack.

“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”

Michelle Diament – Disability Scoop

This new language makes Autism Speaks feel more like a friend. It is almost like we want some of the same things. Is it too good to be true?

I have the cookie in my hand, but I am hesitant to take a bite. Is it laced with slow acting poison?

As awareness has progressed, more have come to understand that autism spectrum disorder is not an illness, but a neurological difference that may present challenges for an individual growing up in a world designed for the neurotypical brain. An estimated one in 68 children in the U.S. are on the autism spectrum. It’s important to remember these children grow up to be autistic adults, who deserve support and acceptance.

Finally, after years of suffering, are we heading out of the “Autism Dark Ages”?
So much harm has already been done. Can they really repair the damage? Only time will tell but I feel as if this is a step in the right direction.

World Mental Health Awareness – I Don’t Want Awareness (I Want Acceptance)

I have written my entire blog around the theme of being “Anonymous” because many Autistic people are invisible, unseen and anonymous in the world. Autism is an “invisible disability” meaning you can’t tell someone is Autistic unless you ask them (or know Autism VERY well and are paying close attention).

People have awareness of Autism – they know exists, they know that Autism is a popular conversation, and it’s prevalence seems to be increasing. In 2014 it was estimated that 1 in 68 children (1 in 42 boys and 1 in 189 girls) are diagnosed with autism spectrum disorder (ASD).

People know that Autistic children can have trouble in school and may be prone to meltdowns, but they don’t understand what causes a meltdown. Being aware that Autism exists and having acceptance of Autistic people are two very different things.

Today is World Mental Health Awareness day – but today I am NOT asking for more awareness. What I am asking for is understanding, true understanding, and acceptance.

Accept me.

When I am staring at you blank faced because I did not understand what you just said. Give me some time to process your words. Sometimes my brain works on a delay. It doesn’t mean I am not listening.

Don’t automatically repeat yourself. I may ask you for clarification. I might have heard you wrong. I’m doing my best. Don’t get frustrated if I ask you to repeat something.

I’m not Rain Man.

I shouldn’t even have to say it – but MOST Autistic people are NOTHING like Rain Man. Some of us have unique skills and abilities and some of us do not. No two Autistic people are the same and I can’t go into this without ranting because I get the “You’re nothing like Rain Man!” comment far too often.

Understand me.

Sometimes I have a hard time verbally expressing myself. It is hard for me to come up with on the spot conversations or talk about my feelings. Words do not come from my mouth easily – if I am talking to you my brain is working hard and I am doing my best.

If I am not talking don’t take it personally. Sometimes, if I am worn down and if I am tired the words get stuck in my mind as if traveling through glue. By the time the words are ready they are no longer relevant.

Don’t underestimate me. 

I do have some unique challenges, abilities, and disabilities. My brain works differently than most of the world but I am NOT stupid. Sometimes people talk down to me or talk to me like I am unintelligent. Technically, despite problems with my working memory, I am a genius so being talked to like a child is EXTREMELY offensive.

There will be things I can not do from time to time and tasks that I may find difficult, but I always try my best and do my hardest. On occasion I may ask for more time to complete or learn something new, but in general I tend to be unstoppable once I set my mind to something.

Stop asking me to blend in (and don’t compliment my ability to hide my Autism).

I can blend in if I have to, but passing is a LOT of work and takes up tons of mental energy. Let’s say I have 12 spoons to get me though my entire day. I only have so many spoons available to me and passing costs me about one spoon per hour. I need to save my spoons and  “passing” is too costly. (Please read The Spoon Theory written by Christine Miserandino if you have NO idea what I am talking about.)

This world was not made for me. Our school systems teach us to blend in, sit still, and follow the crowd. This push to conform has haunted my all my life and eventually, when trying to blend in finally failed, I ended up with an Autism diagnosis.

Let me be me.

It’s been hard for me to learn to accept myself. Asking me to blend in, to fake it and be “less Autistic” makes me feel as if the “real me” is not good enough. I won’t do it any more – nobody should have to feel ashamed of they way they were born.

Today, on Mental Health Awareness Day, more than anything I am putting out a deep wish for true acceptance. Being aware of “mental illness” is not enough. It is important that we accept people as they are.

#WorldMentalHealthDay #invisibledisability #Glitch #mentalhealth #iamwhole#WMHD